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They are at time.com/newsletters and are separate from a paid subscription. ## Video: Searching for a Cure: A Patient's View : Selma Blair, Dr. Oz (moderated by Dr. David Agus) [Watch (HLS stream): Searching for a Cure: A Patient's View : Selma Blair, Dr. Oz (moderated by Dr. David Agus)](https://cdn.jwplayer.com/manifests/amCpdxXz.m3u8) (13:39)  _Published 2019-10-17. Searching for a Cure: A Patient's View : Selma Blair, Dr. Oz (moderated by Dr. David Angus)_ --- Jul 28, 2023 4:54 AM UTC --- ## More From This Series [All Videos](https://time.com/video/) [The Price is Wrong : Bernard J. Tyson, Seema Verma \(moderated by Dr. David Agus\)](/video/1yJ2oqEl/) ### The Price is Wrong : Bernard J. Tyson, Seema Verma (moderated by Dr. David Agus) [Selma Blair and Dr. Oz Share Their Personal Stories with Alzheimers and MS](/video/reSdnkVI/) ### Selma Blair and Dr. Oz Share Their Personal Stories with Alzheimers and MS [Searching for a Cure: A Scientist's View: Maria Carrillo, Dr. Carl June \(moderated by Alice Park\)](/video/BZfQP6bC/) ### Searching for a Cure: A Scientist's View: Maria Carrillo, Dr. Carl June (moderated by Alice Park) --- ## Transcript Adding the patients view. Please welcome actor and advocate Selma Blair, surgeon and TV host Dr. Oz and TIME 100 Health Summit co-chair Dr. David Agus. Thank you and welcome to both of you. You know, in the 1990, so in 1996, there was a cover of Fortune magazine and Andy Grove was on the cover the following year. I'm in my laboratory at Sloan-Kettering, and I'm a geeky little scientist with a lab that's literally the size of this. And there's a knock on the door and he's there. And, you know, that year was also Time Man of the Year. And he went on the cover of a magazine and said, I've got cancer. Nobody did that at the time. And he was a remarkable hero for his transparency and how he did it. And there's a new generation of heroes. And obviously, some of what you did, you know, stepping out and saying, I have a disease and not being embarrassed with, but living with it and being a model for every other person who think they have the symptoms or has a disease is so powerful and so needed in this world. And obviously. MEMMOTT You when your mother is diagnosed with this horrible disease of Alzheimer's and not keeping it inside, but actually talking to her, being vulnerable, saying what you could potentially have done different is very meaningful. And I think that's why we're here today to talk about those. So, Selma. Yes. Oh, you're giving me a look? Yes. Anticipation. Thank you. So you had a lot of years of symptoms leading up to it. And, you know, looking back, would you have done something differently? What I would have looking back, I would have asked for an MRI. I just didn't ask for that simple tool. And no one thought to give it to me. And, you know, I had before my son was born, I definitely was. I was definitely noticed. You know, a kind of rapid aging happening, you know, in my thirties. And that was very painful. And I burned all the time. You know, I just felt like I got arthritis or something, you know. I was very active, a horse jumping. And I just thought, oh, I pinched nerve. That's why I have numbness. I've always had a lazy eyes. So what's one big deal if it goes blind one day? Like, I didn't really, you know, I just thought, well, human bodies are strange and I'm not I'm not a hypochondriac. I'm the one that's like, we're resilient. You know, I just. So I would when, after the birth of my son was incapacitated, I was. I was done. I thought it was post-partum depression. And I went on antidepressants and, you know, didn't, you know, got my life was really conscious, had a macrobiotic diet, and someone making my food really made an effort. I just felt worse and worse. And I did go to the doctor several times and I had all my blood levels checked. They were all like I was malnourished, totally. And I just thought, okay, is that I'll get on the proper food vitamin, But I would have just asked for an MRI when I stopped being able to use my leg when I didn't. And they and my doctor would see me dragging my leg in and I'd laugh about it like, I guess pins to nerve, you know. But it was like kind of dramatic. Well, listen, I mean, seeing you now and what you're doing, it's it's a beautiful thing to watch how many lives you're impacting. I I've I'm it's so wonderful to interact with people and to realize that they had some shame about it. I mean, my only fear when I got it, I wasn't even scared or sad was saying yesterday someone like I made some crocodile tears because I thought that's what you were supposed to do when you got a diagnosis. But I was actually relieved to at least feel like I was among you. Other people feel isolated. I felt like, Oh, I have a human disease. I am human. So I felt like, Oh, well, we'll take care of it. I also thought it would be fleeting because I do know other actors that have it may continue and some are quiet about it. People have it and don't say anything. So but my symptoms were kind of, you know, flamboyant and, you know, it just I have glitches for me, that man, you know, and that and I had finally gotten a job and I had to tell them and they were wonderful. And then when I saw how much I actually needed help, I was like, oh, I have to thank these people. So that it really came out of that. And I also didn't want people to think I was drunk because I have a history of that. I'm sober and I'm so proud of it. So I that was really the reason I had rather someone think, Oh, she's going to be in a wheelchair. Then she's open the minibar. That was like better for me. But I see other people really were so comforted that I wore a cane to a glamorous event, which I didn't even think about. I just didn't want to fall right. And that it means something to them. It's like, Oh, I'm glad I'm useful now for a bit because I do see so many people get so isolated in these chronic diseases. You know, it's such a failure to the medical system that obviously for many years you went undiagnosed and had that stress. And I feel horrible about it. And obviously that has to change. And it I mean, that's part of your story in a sense. You're one of the most celebrated doctors on this earth, and you had a mother that you diagnosed with Alzheimer's. And you look back and you said publicly that you saw the symptoms before and you feel horrible. You didn't do anything about it. You know, much easier. Recognize the symptoms when they're behind you at a huge screen. You're talking to everybody about what they ought to be looking for, but watching your own family. And I'm not alone. I heard more feedback on this story that ever I would have imagined. And it's not just that there's 60 million people taking care of all the folks who are ill, who have Alzheimer's, and there are about five and a half million of those folks. But the deeper reality that we lost our truth in my family and I think the biggest lies we tell, the lies we tell each other and in our families, those lies are especially pervasive because no one wants to be. The sibling puts their hand up and says something's wrong with the some over here, she's dragging her leg. Maybe someone should tell to get an MRI scan because our doctor's not doing that. And in my family it fed into a much deeper pathology. And it's all about trust. I mean, what is trust, right? Trust is knowing what to do and then doing it because you knew it was the right thing to do in your case, you were let down because they didn't know the right thing to do. But in my case, I knew the answer and I didn't do it. Both of those are distrustful moves, and if you do both those things the right way, you end up with much better outcomes. I've learned so much about Alzheimer's that I didn't know as a as a TV, as a practicing clinician at Columbia University. And I recognize that if we start treating people as soon as they have Alzheimer's, we still missed the boat. We need to figure out when they have plaque because the plaque is a match. This is retains these verbiage is the match that lets the brush fire, which is individual nerve cells dying, which leads to the force fire of Alzheimer's disease. Decades earlier is. Exactly. But we have now, as you know, the most exciting thing about Alzheimer's is the fact that we we're actually be able to figure out, at least with some early tests, that you may get Alzheimer's, forget about genetic testing, which everyone should should get. Well, let's explain what that is. So there's a particular gene that you could test for how many copies you. He dented the things he discovered these things which tell everybody. APOE4 is a particular gene. We're telling you to explain it. Good job. It can tell your personal risks, but it's not deterministic, which means it's not going to happen. So if people always says, Hey, I don't want to have that test, I don't want to know. But there's a beautiful NIH study called the Reveal study that showed that knowledge is power, right? If you have that gene, it means someone in your family had Alzheimer's already. So we all in the back of our mind think we're going to get it. And actually taking action is powerful. So how have you changed with this? You know, obviously you took the genetic test. So my mother is April e4 E4, which is the worst of the bad combinations, which is why so many people in her family have Alzheimer's. I got one of her genes and I got one of my father's genes who's actually a as a protective gene. So I net out, you know, about average and but the average isn't good enough because one in three of us will get Alzheimer's is still the most feared disease we have. And so recognizing that I started changing the numbers that I accepted. So as the example of the heart, Doctor, so cholesterol numbers, I know exactly what I should do to prevent a heart attack. But the numbers for me are different, me personally, because I have this risk and for many of you have it as well. It's not good enough to tolerate an LDL cholesterol, but I was tolerating, you know, above 100. You've got to get stricter about it in similar fashion by belly fat quotient. I would not do well with diabetes. It'll be a big problem for me. I benefit from omega three fats and B12 and folic acid. Some people would, some don't. But down my nose I take them and my mother is on a whole slew of stuff that I got her on. But I know already in my heart that I missed the boat. I can slow down her progression, but she's not going to be the sharp woman, the woman who's able to navigate almost any political scenario like she was when I was a child or a younger adult. Summit this summer. You went through one of the most aggressive and almost barbaric treatments we have in medicine, which is we call a stem cell transplant. And so it's aggressive chemotherapy, in a sense, reset your own immune system. What was it like? I mean, we go in there, you go in there, obviously make symptoms, but then we hammer the hell out of you with a drug. Yes, I, I haven't talked about it much yet because I've been wanting to show everyone that the proof is in the pudding. But my pudding is still kind of scrambled, so I, you know. No. And I want to scare people away. I, i the disease modifiers didn't work for me at the time, and I was really declining more rapidly than I found acceptable. It was strange. So someone mentioned Doctor Bird at Northwestern and that someone also sent me there to see him and I had no intention of doing it. I was like, I am not ruining my body. What's left of it. Why would I put this horrible drug in at chemotherapy? I don't have cancer. I don't need this this horrible. But I was kind of out of options and I was looking and this when he put me on a micro dose of chemo months before the transplant worked, I immediately felt some relief. So I was like, Oh, maybe I just have too much junk in there. And that killed some junk. Like, what do I care if it kills male biotics? My whole body's like one big macrophage of yuck, you know, like. Just I like to use in the medical term. Yeah. It's just it was, it was very full. It couldn't take any more viral overload, everything. So I did it and I was warned and you kind of, you know, you kind of make your plans for death, told my son I'm doing this. You know, he would like me cremated. I mean, we don't have to worry about that. But it was, you know, a little, little hard. I had a great support system, but I did have you have more chemo than for cancer patients because the aim is to kind of kill you. And it's the stem cells that allow you to live with the amount of chemo. The chemo is what is the most cure if in fact it does that. And it was I felt very taken care of. I had some complications. But overall, you know, it went pretty smoothly. I'm pretty good if I'm prepared. You know, if someone says this is going to be horrible, I'm like, not that bad. When someone says, when I left the hospital, I was like, You're great. And I'm like, Oh, shit, You know? And someone says, You're supposed to be great and don't feel great, yet you feel you fail when someone says it's going to be harder than you do, well, you're like triumph. So it was okay. It was okay. But my hair's still not growing and. Neither is my. Body. We we go to the same hairdresser, but that was a small thing. I never minded hair loss or any of the things that would be ego involved. I just. My dream is to lie next to my son at night and be there as long as he needs me and hopefully do something for people because I've heard so much from people with chronic diseases. MF You know, they're scared and they don't know when it's going to get worse. And and I and then I didn't know anything about it so well. You've become an icon and a hero for so many, not just with EMS, but with all chronic diseases and for that medical community. Thanks you and for what you're doing. We all thank you. Thank. And Mitt, you know, I can't underestimate any you I mean, one of the great doctors actually being so vulnerable and making it a learning moment, something in your family, making a learning moment for others is so powerful. And we all look up to that. I look up to that. And so thank you both for being you and for what you've done for everybody. We appreciate it. Thank you. Yeah. 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