An Alzheimer's Survivor?

[00:00:02] Speaker A: At this point, I'm so much better. I tell people I'm 80%, 90%, some days better. It's hard for me to, as you say, own it. Not that it. I do have Alzheimer's disease. There. There are things that are going wrong in my brain. But we actually have a medication now that has really transformed my experience and many other patients that I am familiar with that have experienced what I have. [00:00:47] Speaker B: Welcome to the Age of Aging, a show about living well with an aging brain. Produced by the Penn Memory center and the Michael Nadoff Communications Hub. Hello, I'm Terence Casey, and I'm joined today by executive producer Dr. Jason Karlewish. Today's episode is about Dr. Brent Beasley, who was 57 when his supervisor called him into her office and fired him. In internist, he had been forgetting instructions and struggling with technology he'd always handled with ease. His boss figured he had a substance abuse problem, he assumed. But what he had was Alzheimer's disease. Overnight, he lost his income and his health insurance. That was more than two years ago. Today, Brent gets an infusion of lecanemab every two weeks. He plays guitar and piano. He's a deacon at his church, a teacher and a writer. And he has two grandchildren who bring him great joy. Brent tells Jason that he is, and I'm quoting, 85, 90% better than he was when he was first diagnosed. On his best days, he feels back to normal. After the interview, Jason and I will sit down together to talk about his conversation with Brent and how it squares with the science and practice of anti amyloid therapy. Here's Dr. Jason Karlewish in conversation with Dr. Brent Beasley. But first, a word from our sponsors. [00:02:06] Speaker C: What if a visit to an art museum could spark a new conversation, inspire curiosity, and help you see the world differently? Discover Patha Museum, America's first art museum and school. Explore a nation of artists. A remarkable celebration of American art inside our spectacular historic landmark building designed by celebrated Philadelphia architect Frank Furness. Make time for art inspiration and discovery at PAFA Museum in Philadelphia. Plan your [email protected] that's P A F A.org [00:02:45] Speaker D: Understanding longevity can better prepare individuals to make thoughtful decisions not only about their finances, but about their health and lifestyle, too. Matching lifespan with healthspan and pairing both with financial readiness has become a defining challenge. The TIAA Institute wants to help build longevity literacy to better support outcomes for all. [00:03:11] Speaker E: Welcome to the Age of Aging. I'm Jason Korlewish, and I'm here together with Brent Beasley. Brent is a Retired physician living in Kansas City, Kansas with his wife Cindy. He's the father of three grown children, a deacon at Holy Trinity Orthodox Church in Overland Park, Kansas. And although he's no longer practicing internal medicine, he continues to care for people. He's a teacher and has led a session on giving bad news for the medical students at the University of Missouri Kansas City Medical Center. And he's also a writer. The subject of his writing is himself on what it is like to be a person living with Alzheimer's disease. In his Wall Street Journal essay, I detected my Alzheimer's at 57, early enough to intervene. He recounts what happened when symptoms began to impair his performance practicing internal medicine. He wrote, my supervisor called me to her office and fired me. I was forgetting instructions and struggling with technologies I had always handled with ease. She probably thought I had substance abuse problem. In reality, at 57, I had undiagnosed Alzheimer's disease. Overnight, I lost my income and employer sponsored health insurance. My wife Cindy felt like she was losing her husband. Our hopes and dreams crashed down around us. In the months that followed, he and Cindy pursued a biomarker, confirmed diagnosis of Alzheimer's disease and treatment for the anti amyloid drug lecanemab. It's now my privilege, physician to physician, doctor to patient, to speak with Brent Breezley. Brent, thanks so much. Welcome to the age of aging. [00:04:46] Speaker A: I'm glad to be here. Thank you, [00:04:48] Speaker E: Brent. I'm going to dive right in. Why did you choose to go public with your diagnosis of Alzheimer's? [00:04:54] Speaker A: I think that's a really great question. And I think one of the things that I have tried to do all my life is to live truthfully. I do not. I do not find that hiding what I'm going through is going to help me or my family. And so from the time that I first had my diagnosis, I actually turned around and told my church at the end of the church service what was going on. And well, number one, it wasn't very fair to my wife because she wasn't ready for that yet. Number two, though, it did allow us and my church to understand more what's going on with me to I understand why I was fumbling in the altar and my friends were there to reach out and help me. [00:05:54] Speaker E: So I understand. Well, you know, I think the dictum, the ethic, living in truth is obviously meritorious, particularly I think as a physician where apropos, where, you know, one of the sessions you live with the medical students was on breaking bad news. In other words, telling the truth of a Diagnosis of a disease. In this case, the disease, of course, is Alzheimer's. That's a high octane diagnosis, carries with it a lot of stigma. So let me push you. How do people treat you after they learn that you're a person living with Alzheimer's? Did, did they. Did it change? How did it change? [00:06:28] Speaker A: That's a. That I think that's a fair question. And my friends, particularly my best friends since fe school, we get together every year and go skiing or do something, and they surrounded me and lifted me up and encouraged me. And I think that is another reason going public is helpful for us. When I say us other people with Alzheimer's, so that people that love you can understand what you're going through and be there for you. [00:07:06] Speaker E: What about colleagues, fellow physicians? How did they react to hearing this? [00:07:10] Speaker A: Yeah, I'm very thankful for my friends that are other physicians that I've been friends with for 20, 30 years. So I just yesterday reached out and one of my buddies who used to be in, in the Kansas City area has moved back to Virginia. And, you know, we pick up and talk like old times. But I think that interacting with the people who know us and love us best, that's really important to me. [00:07:43] Speaker E: And interacting in the truth. [00:07:45] Speaker A: Absolutely. Yeah. [00:07:46] Speaker E: Yeah. Well, let me your account of what the encounter with your supervisor is. It's emotional to read and it must have been an extremely emotional moment. [00:07:56] Speaker A: It was very painful. [00:07:58] Speaker E: Yeah. Have you reconciled with the supervisor? [00:08:01] Speaker A: No, I've never been back to that office or talked to her at that time. Would you like [00:08:06] Speaker E: to? [00:08:08] Speaker A: I don't feel a need to. [00:08:10] Speaker E: I see. [00:08:10] Speaker A: I don't know what all was going on with her, but I do think that she probably thought I had a substance abuse problem. I think that's what I would have thought. [00:08:20] Speaker E: Common things being common. [00:08:22] Speaker A: Common things being common. Right. [00:08:24] Speaker E: Yeah. I mean, I think the challenge of this disease in the workplace is a very real one. And. And I think those in the workplace are just beginning to figure out how to cope with this in a way that I'll use a strong word, but treats people with dignity and respect. Because I don't sound like you were treated. It does not sound like you're treated with dignity and respect. [00:08:44] Speaker A: Yeah. And again, she didn't know what was going on. It's not fair to put that all on her. But it is a part of my journey of figuring out what happened to me and what's going on. [00:08:56] Speaker E: Yeah. Let me, you know, your physician. And of course we deal in diagnostic labels. You know, we tell People, you've given me a set of signs and symptoms. I've examined you. And my job is most essential is a diagnosis to say to someone, this is what explains what you're experiencing. What do you. What's just state for me, what's your diagnosis? What. I am a person who has [00:09:19] Speaker A: Alzheimer's deficiencies. And yeah. And I own that. It is what it is. I'm really thankful to be living in a world where we actually have treatments for Alzheimer's disease. And I know we'll probably come back to that and get back to that. But that's an important thing for people to know, is it should not be hidden anymore. It needs to be taken to the doctor and make sure that somebody's getting help. [00:09:48] Speaker E: And I want to talk about treatment later. You actually read my mind. But first, I want to still hone in on diagnosis. Because, of course, you also had a biomarker based diagnosis. [00:09:59] Speaker A: I did. So. So one of the things about being a physician is you have friends who are physicians. And so one of my buddies, a neurologist in town, my wife called him up and said, you know, Brent's struggling with things and we don't know what's going on. Can we come to talk to you? And so he invited us to his office. He was, as I say, playing with at the time a biomarker called P Tau217. This was very early. It wasn't, you know, widely available at all yet, but he had access to it. He says, I think we ought to check this one out. And it came back positive. And that biomarker, that P Tau217 is very specific for Alzheimer's disease. [00:10:53] Speaker E: And what was it like getting that level of specificity? Because of course, you and I know up until not terribly long ago, we couldn't do that. The best we could say is, well, here's what's probably going on. [00:11:06] Speaker A: And you couldn't tell which dementia or which mental problem people were having necessarily at that time. What [00:11:14] Speaker E: was it like to get that level of certainty from a test like that? [00:11:20] Speaker A: Number one, it's devastating to get that diagnosis. [00:11:24] Speaker E: Of course, [00:11:25] Speaker A: working through that and Cindy and I going home crying after that, that's part of the journey. But I was so thankful that you could actually figure out nowadays what the problem is, you know, that we didn't have that when I was a younger doctor. [00:11:48] Speaker E: Yeah. No. And I practiced at a memory center. And that was exactly our experience as well. The best we could say was probable. And to be candid, meeting a gentleman like yourself at Your age, oftentimes it was a long kind of. Well, it could be depression, it could be anxiety, you know, it could. Etc. And people were living with these mysterious mental phenomena, you know, and no clear answer. Yeah. So initially, obviously, quite sad, but in sometimes what I hear is the certainty. I don't want to put words in your mouth, but what emotions did when the certainty of things settled in as opposed to the mystery. [00:12:19] Speaker A: I think. I think it's. I think we're living in a time that when you get that certainty and somebody says to you, but we have treatment now, that's different than if there had been no treatment for me, you know, if they had told me, you've got Alzheimer's disease and there's nothing you can do about it, that would be a whole different story. [00:12:44] Speaker E: I understand. We'll talk more again about things you can do, treatment and other things, but let me just stick with the nomenclature labeling again to take advantage of your expertise as a physician, which is, I think, what makes this conversation really quite unique and important. There are, of course, other words that surround Alzheimer's disease. Two of the more common ones, if you will, are, of course, mild cognitive impairment and dementia. Describing, of course, the clinical stages of Alzheimer's disease. Do you own either of those terms and how you describe yourself [00:13:12] Speaker A: at this point? I'm so much better. I tell people I'm 80%, 90%, some days better. It's hard for me to, as you say, own it. Not that it. I do have Alzheimer's disease. There. There are things that are going wrong in my brain. But we actually have a medication now that has really transformed my experience and many other patients that I am familiar with that have experienced what I have. [00:13:46] Speaker E: Would you call yourself someone living with mild cognitive impairment? [00:13:51] Speaker A: On my best days, I feel back to normal, and that's my best days, obviously. Some days, you know, I'm tired, I'm fatigued, and I'm not clear, particularly if it's been two weeks between my infusions. We'll get to more about infusions, but I'm on the lecanemab infusion every two weeks, and my wife can kind of tell, you know. You know, he's maybe not at his best right now. [00:14:21] Speaker E: Not as sharp. Yeah, [00:14:22] Speaker A: I did. I did just get my infusion yesterday. [00:14:26] Speaker E: What do you think about just. Again, you're in an interesting dual position. You're both a physician with knowledge about disease and words. No. No disease label is a pleasant thing. No one celebrates a disease label, but nonetheless. But you're also Now a person living with the disease. So let me get you to reflect almost kind of occupying those two positions and trying to fuse them. What do you think about the word dementia? [00:14:51] Speaker A: I don't like it. You and I, as physicians can say the word dementia. We know what we're talking about. But I think in general usage, people sling it at each other. Does that make sense? [00:15:02] Speaker E: It absolutely does. Beginning, for example, with politicians, been rather distressing, I think, over the course of the last eight to 12 years, the word dementia is used as a political insult. What do you think about that? [00:15:15] Speaker A: I think it's dangerous and not helpful. [00:15:18] Speaker E: I agree. Yeah, I agree. I think it needs to be talked the way we talk about cancer. Not pleasant, but it helps describe what's going on, namely cognitive impairment that's causing disability, which, as you explained, is not your case right now. There's fatigue, some inefficiencies. But, you know, this was diagnosed before disability, albeit maybe, you know, the workplace performance. But, you know, your work, our work is a very cognitively demanding work where I think even someone with MCI would struggle [00:15:45] Speaker A: absolutely [00:15:46] Speaker E: to practice medicine. Let me carry on here because now we're kind of. I'd like to move from diagnosis now to care and issues of treatment. And I use the words care and treatment to make. To get the whole picture of what's needed. Obviously you mentioned already, and understandably, lecainimab, the anti amyloid drug. But I want to go back to that Wall Street Journal essay where you wrote, I'm more than two years beyond my diagnosis, living a joyful and purposeful life. How did you achieve this? [00:16:19] Speaker A: Part of it is doing what you and I are doing right now is having this conversation and getting the word out there. I want other people to know that we have treatments for this disease now. And so this is, I guess you'd say, a passion of mine to let other people know. [00:16:41] Speaker E: That's purpose. [00:16:42] Speaker A: Yeah. Is there. That is purpose. Absolutely. [00:16:44] Speaker E: In some sense, you know, while you're not practicing medicine, you still are in some sense practicing medicine. You're talking about a disease, raising awareness, helping people understand it. Let me push, though, on the. That's purpose. Let me just push on the joyful part. What makes life joyful for Brent, [00:17:00] Speaker A: Frank and Wendy? [00:17:03] Speaker E: Who's that? [00:17:04] Speaker A: They're my grandchildren. [00:17:06] Speaker E: Okay. [00:17:08] Speaker A: And that's. I would not be where I am today if I did not have a medication that we have today. And so I would not be enjoying my grandchildren in the same way if I was still lost on a fog. There's no way. Now Frank. Frank is two and a half. Wendy is five months, six months. And they are joy to take care of. I love getting the opportunity to interact with my grandchildren and hopefully I'll have more. But that. That's a joy for me and being with my friends. I'm going to be with my buddy Tom for lunch tomorrow and you know, getting to interact with him and hear what. He's actually still practicing and you know, he's a pediatrician and you know, we'll talk. We. He and I will talk about what it's. What's going on in his world. And I love. I love getting to do that. But even people who have nothing to do with medicine, I really enjoy my friends and those friends and family members are important to me. [00:18:16] Speaker E: There's another treatment that you're receiving. This may shock you when I describe it as a treatment, but it's pretty clear from your other writings that another human has been very important. Cindy. [00:18:26] Speaker A: And Cindy is absolutely important to the whole story. I wouldn't have been where I am at this point without her [00:18:36] Speaker E: talk about that. [00:18:37] Speaker A: So when I was sickest, if it wasn't for Cindy, I wouldn't have gotten on the medication. The we learned that I had the disease. The next thing that happened was we learned that there was a medication, Lecanemab, and there's another one called Donanemab. Both of those medications are available. And Cindy struggled her way through our incredibly complex healthcare system. And I use the word system very loosely. [00:19:19] Speaker E: Listeners will note that Brett raised his fingers in scare quotes when he said the word system. [00:19:24] Speaker A: Yes, Our health system. It was so complicated and difficult to get me the medication. [00:19:33] Speaker E: So let's think about this. [00:19:34] Speaker A: I couldn't have done it myself. [00:19:35] Speaker E: Exactly. You were struggling to practice medicine. And in some sense, you know, I [00:19:40] Speaker A: had. I had already been fired. So there was. I wasn't struggling anymore. [00:19:46] Speaker E: Given the struggles of practicing medicine. Imagine the struggles of going through the various paperwork and whatnot. [00:19:51] Speaker A: Absolutely. And [00:19:52] Speaker E: she hard was phone calls to the insurance company, press 38 [00:19:57] Speaker A: over and over. Yeah. She finally found some pharmacist, as we say, pharmacist named Chuck. And I don't know what his name was, but that would helped her figure out how to get the medication. For me, I mean, it was really complicated and difficult. I think people now are having an easier time getting through that, I hope, but I'm not certain of it. [00:20:25] Speaker E: There's also the issues around scheduling the appointments and the MRIs, et cetera. [00:20:29] Speaker A: Absolutely. Yeah. Yeah. [00:20:31] Speaker E: So I want to follow up what we were talking about nomenclature with respect to diagnostic labels. Alzheimer's, mci, dementia. What words describe her? What does she see herself as a caregiver or care partner? [00:20:44] Speaker A: A care partner is the word that I think we've used the most. [00:20:48] Speaker E: I see, I see. [00:20:49] Speaker A: My wife is really an amazing person, but she needed herself to have a support group. So you brought together a group of ladies who all have husbands with dementia and they have a name for their club. [00:21:11] Speaker E: Yes, it's a very interesting name. Go ahead. [00:21:15] Speaker A: The Shatan Club. [00:21:20] Speaker E: Not to be confused with Chiton, Wisconsin. The. Tell me more about the Chiton group. [00:21:27] Speaker A: Well, it's been a very important group for her. And all of the. All of the ladies have husbands with some form of dementia. And it's. And it's not all Alzheimer's, but other. Other types of dementia. And it's. [00:21:41] Speaker E: She finds the group valuable. [00:21:43] Speaker A: Absolutely. It's been really a core part of what has helped her, you know, that she can get her way and talk about what she's experiencing and what she's going through with a husband that can't always figure out what's going on. [00:22:00] Speaker E: Do you guys talk about the future? [00:22:03] Speaker A: Yeah, we do. And we make plans. We've been thinking about do we want to be in this big house anymore? Do we want to move to a easier place for us as we age? We're both aging. [00:22:17] Speaker E: Yeah. So you talk about where to live. [00:22:19] Speaker A: Right. [00:22:20] Speaker E: I want to read your answer to the question from the OU Community Focus, which was a one page profile of you when you were a physician practicing. And the question was, what does being a doctor mean to you? And you wrote, what I find most rewarding about being a physician is walking alongside patients in some of their scariest times. Disease and disability are frightening and patients are looking for hope and a vision of what the future looks like. Most of the time I get to say it's going to be okay, but occasionally I have to say this is sickness unto death. We're going to make sure you're comfortable and get you the help you need. How well is medicine walked alongside you? [00:23:02] Speaker A: And I don't know if this is going to apply to general population. As a doctor, I have a lot of opportunities and friendships that give me leeway that other people don't have. And so when I worry about, I worry about that there are people out there who haven't recognized that they have dementia yet and may not have a community. [00:23:37] Speaker E: Yeah. [00:23:38] Speaker A: Cindy and I have a faith community that has walked with us through this journey in very real ways. But if I were a man living alone in a house with no job and. And not well connected, this would be terrible. [00:23:58] Speaker E: Yeah. Yeah. I think one of the points you made that resonates with me personally, and I've spoken about my experiences, a caregiver for my father who, like your father, had dementia and died. [00:24:09] Speaker A: Right, right. [00:24:11] Speaker E: Of how I don't know how other people manage care because of the knowledge I had to be able to keep him going came from my practice. [00:24:23] Speaker A: And you knew who to call. You knew what different other places that could help, things like that, [00:24:28] Speaker E: what to expect. Because. Not to be rude, but his physician was a decent physician, but it was not going to take this on with the rigor it needed and didn't have the support services either. [00:24:40] Speaker A: Yeah, [00:24:41] Speaker E: yeah. And it made me very afraid and scared and sad for the plight of others. [00:24:46] Speaker A: Yeah. [00:24:46] Speaker E: Okay. You said, you know, it's either going to be okay, but sometimes you have to say it's a sickness unto death. Is it going to be okay for you? [00:24:55] Speaker A: Yes. Yes. And I'm a fortunate man. I have people around me who will make sure I'm okay. [00:25:06] Speaker E: Well, let me. You don't see it as a sickness unto death then, is in some sense what you're saying, Right. [00:25:14] Speaker A: At this point, I don't know what's next. And I say that because the. The tau drugs are on the horizon. I mean, wouldn't it be incredible if now we have tau drugs coming that could maybe totally reverse this? That's one of my questions. We won't know until all the studies are done, but they're very promising. [00:25:41] Speaker E: Yeah. You know, when I look at the data for lecanemab, the clinical trial published in Journal of Medicine, same similar data for Donanemab in the paper published in JAMA Neurology, I believe they both talk similar story. And the drug is more effective than placebo. It's very obvious over 18 months. But the curve of the person's on drugs still does continue a slope of decline, albeit slower than those who were on placebo. Have you thought about how you would manage if over time you do experience changes in cognition and function? Thought about whether treatment was something you would continue or. Or how you would approach treatment? Is that a topic that's occupied? [00:26:27] Speaker A: I. I plan to ride the wave. [00:26:31] Speaker E: What does that [00:26:31] Speaker A: mean? That means right now I'm on lecanemab. If there's something that comes out that, like I said, one of these Tau inhibitors is valuable, I would like to be on that. I would like to do whatever I can to Stay cognitively intact as much as possible. [00:26:52] Speaker E: I see I'm going to see a patient in a couple weeks. Referral in my practice memory center. And one of the reasons for the referral is the individual has been diagnosed with Alzheimer's at the mild cognitive impairment stage. I think much like you very early in terms of the severity of the symptoms and their impact on daily life. Inefficiencies really are the big major problem. Congregate demanding things are definitely a challenge. And one of the reasons why I've seen this individual is because the referring physician wanted to expand the group of care because this person is pondering ending their life at courtesy of the services of Dignitas, which is a Swiss based organization. Lethal dose of second all or I forget exactly which drug to individuals who have an illness considered terminal and they obviously agree and consent to it. And you know there's also a book written by Amy Blum about her husband who pursued that called in A Memoir of Love and Loss. I've certainly had other patients mention this topic as well. I'd like you to react to that approach to how to live with Alzheimer's, namely to end one's life far prior to when the disease might do that. What are your thoughts? [00:28:03] Speaker A: It's. I have a lot of reservation about people ending their own life even in a medical capacity, a medical way. I again I'm in my faith tradition that wasn't. That's not an option for us and not something that I would encourage. So for me that that would not be on the table. [00:28:38] Speaker E: Yeah, it's interesting the my conversation with the gentleman Samuel who does the one man performance dementia man. He has the same view as well as yours and also it's grounded in his very deep faith, he's Jewish faith that he has. It's interesting he reached the same rationale, if you will, based on his faith. Two more things. So you're a physician and you're a physician obviously living with Alzheimer's, as you said. I want to go back to that insider outsider perspective. What advice? Knowing what you know, knowing what you've been through. What advice would you give to physicians around how to care for people living with Alzheimer's disease? [00:29:15] Speaker A: I really hope that physicians will become engaged in what's happening in the Alzheimer's world, that we actually have these treatments that are available and I am as a survivor and I would use that as a term for me as a survivor of Alzheimer's disease and I continue to do well on the medication. As I said, I'm hopeful that the new medications will be out soon and will be effective. Also. I'm very hopeful. I'm very encouraged by the leaps and bounds that we've come from. So I'm not seeing number one. I will debate and I have a friend who's a NASA engineer. He and I both have the same experience. We don't feel like we have are slowly getting worse. He and I both have agreed we are back. I mean, as I said, I may not be perfect, but I'm 85, 90% better than when I first had the disease. So it's hard for me to say, oh yeah, I'm just gonna go slowly dwindle over time. I'm hopeful again to continue writing this medical wave of the new medications that are coming. And I look forward to what being the best Brent Beasley I can be. Does that make sense? [00:30:56] Speaker E: It does. And leads me to the next question. What is it like to be Brent? [00:31:03] Speaker A: I, I am a person who, I love music. I play guitar and piano. I get a lot of joy out of music. I've gone back and put in a my high school play playlist because those are the songs that bring me joy. I love being with my family and getting to spend as much time with those two little ones as possible. I'm so proud of my children. My oldest finally got married, just got married this a few weeks ago. And my daughter is an internal medicine program director like I was. She's taken my place. She stepped in and is working at Kansas University in Olathe. She's a program director like I was. I'm very proud of her. My youngest, she is a hiker, a camper. She works for Morgan Hunter, which is a placement firm. And those, those three, they inspire me. You know, the things that they do in life. I, it's impressive and I'm, I'm thankful that I get to be here for them and with them. [00:32:21] Speaker E: What I hear, simply put, is being Brent is being creative and connected with friends and family. [00:32:28] Speaker A: That's a good way to say it. [00:32:31] Speaker E: Let me give you the last words. Any last words for our listeners? [00:32:37] Speaker A: I guess I, I guess the word I would use is hope. We have a lot of hope now. [00:32:44] Speaker E: A good four letter word as we. [00:32:46] Speaker A: Absolutely. [00:32:48] Speaker E: But B, I want to thank you so much for appearing on the Age of Aging. I think the opportunity to hear from individuals living with Alzheimer's is always valuable. I think the unique opportunity to hear from physicians living with Alzheimer's only amplifies that importance. And so I really want to thank you for your courage to speak up and out about what it is like to have Alzheimer's and the hope you feel for the diagnostics and the therapeutics. So thank you very much, [00:33:13] Speaker A: and thank you. I really enjoy getting to have our conversation today. [00:33:18] Speaker E: You're really welcome. [00:33:27] Speaker B: That was Dr. Brent Beasley in conversation with Dr. Jason Karlewish, and Jason is here with me in the studio now. Jason, thanks for that interview, and thanks for joining us today. [00:33:35] Speaker F: You're welcome, Terry. It's great to be here. I think listeners need to know, by the way, that we had our first coffee spill in the studio. [00:33:41] Speaker B: Yeah, that certainly woke us up a bit. [00:33:43] Speaker F: Yes. It's an event in the life of podcasting when you have your first coffee spill. [00:33:47] Speaker B: Now, this wasn't our first interview with a physician living with Alzheimer's disease. And I don't want to reiterate the what's it like to be Dan episode too much. But just briefly, these felt like very different interviews to me. Absolutely. You conducted both interviews. Tell us some more about that. [00:34:03] Speaker F: I did, yeah. No, and I would invite listeners to actually pair these two interviews together. This interview with Dr. Brent Beasley and my interview with Dr. Dan Gibbs, who's a neurologist living with Alzheimer's disease, and I think it will be quite evident to listeners has a greater severity of his cognitive and related impairments caused by Alzheimer's. And so it's an interesting juxtaposition. I think Brent is a good example of what it's like to live with a diagnosis quite early in the course of symptomatic disease and also the experience of being on therapy. Because when I interviewed Brent Dan Gibbs, he was not on therapy. He had been on Aducanumab, but unfortunately had not tolerated it because of serious side effects related to bleeding and swelling in his brain. And this was several years later from when he was first diagnosed and capable, like Brent, of writing and speaking about what it's like to be a person living with Alzheimer's. [00:34:52] Speaker B: I want to start with disclosure and Brent Beasley's quick willingness to disclose his diagnosis to his church. He did it at the end of the service. He said in there that he didn't feel it was fair to Cindy because she. She wasn't prepared for it. But it helped his community understand any issues that may have come from the altar. What do you make of somebody who's willing to sort of open up themselves that quickly? [00:35:16] Speaker F: Yeah. Well, first, they're brave, I think, because the stigmas that surround the disease are many and multiple. Second, though, I think it's A theme in his interview. It's a very strong theme, which is the importance of others, of community to live well with the disease, whether that's his church community or others. And it's a theme I've picked up from other patients, which is, I'm going to get through this disease because of the people around me and the support I get. And I applaud his bravery. The fact that it was a church community is his particular community. I think the larger message there is to patients, who is that circle of supportive other people that you can talk to about this. And I hope it's a model for others to think about, not keeping the diagnosis private and secret, but rather disclosing it to people who are going to care for you mentally, psychologically, emotionally. [00:36:07] Speaker B: And that network is something he talked about many times over the course of this interview. He talked about a neurologist friend with access to P Tau testing. He talked about his wife, Cindy, who helped him, at a bare minimum, help navigate all of the insurance. [00:36:23] Speaker F: The [00:36:23] Speaker B: insurance system. Pretty clear. [00:36:25] Speaker F: I don't think he would have gotten through it without her. [00:36:27] Speaker B: Yeah, well. And she talked. Or he talked about her own networks with the sort of funnily named Shatan, I believe, was the support group. So both patient and caregiver had these pretty intricate, very supportive networks around them and seemed they both greatly benefited. But not everyone has such a benefit. I'm sure in your clinic you've seen that. How do you. Well, [00:36:48] Speaker F: you know, it's interesting. I just recently finished reading the novel Switzer, which I highly recommend, and I have the hunch we're going to be talking about that more in further episodes. I highly recommend it. It's a novel about an individual with dementia caused by Alzheimer's disease, early stage, like Brent, in terms of the severity of disease, who's on it when we meet him, he's flying to Switzerland to ultimately end his life. And I think it becomes very clear as you start learning about this gentleman, this novel, it is a novel that he has no one. He has many people, work associates, a dedicated administrative assistant who's traveling with him, but he really has no one. And I think Brent's an example of the opposite. He has lots. When I was interviewing him alone, because it was just him in his house, there were actually many people in that room helping Brent be Brent. And I think the general lesson, again, is to live with diseases that damage the mind. It is all the more incumbent on people to bring in other minds to support them, which I think is an irony, because particularly when you're diagnosed quite early, like Brent, where he. And I know this sounds somewhat insulting, quote, seems okay, because he is okay. And he told us that even then, you need other people to support you to other people, to help you make sense of, come to terms with and live with this. [00:37:58] Speaker B: Now, I'm glad you brought up the novel. You know, we talked about at end of life and assisted death. Yeah. And we could spend a whole season of episodes on the topic. But you brought up dignitas in the conversation with Brent, and. And it was pretty quickly shut down of, well, I wouldn't consider that because of my faith. And this was. And we had sort of argued back and forth in our own meetings about how much we wanted to talk about this. But this is something that people think about in both the clinic and outside. [00:38:28] Speaker F: And I've seen some patients recently where that's one of the things they're planning. They're pondering, for example, dignitas and related approaches to ending their life. [00:38:36] Speaker B: And do you provide any advice, counseling when you hear that, [00:38:40] Speaker F: you know, the answer is it's a new area. And I think the field's gonna have to become more comfortable addressing it, because the earlier we diagnose people, the more they still have the agent of abilities to decide what they want and even act on it and. Or get others to help them act on it, as was narrated in the nonfiction book by Amy Bloom, In Love, where she clearly, much like Cindy, helped Brent get insurance. She helped her husband fly to Switzerland and end his life. I think the points I try to bring out with patients is to think about who is that network of trusted, available, reliable other people who will care for you, and how do they know you? How do you know them, and what story do you want to write with them of how you lived with this disease? Because they're going to have to help you write that story and live with that story after you're gone, whether you're gone because you died on a pleather couch in Zurich because of a lethal dose of Seconal, or whether you're gone because you died of complications related to the disease potentially much later in the stage. Either way, you're gonna write a story that they're gonna have to live with. [00:39:40] Speaker B: Now, when you broached this question, he spoke first of his faith, but over the course of the whole interview, he had a very optimistic perspective about his current life and even his future life. He brought up that he was 85, 90% better. You pushed back on it a little bit in terms of the how effective the drugs are in contributing to that. Do you attribute his social network to reaching that 85, 90%? [00:40:06] Speaker F: I think there are many factors probably at play for why patients feel better after they get diagnosed and treated. And one of them is, I think the information and explanation, the horror story, the mystery is gone. I now know what is causing me to have these weird, strange mental phenomena. I think for many patients, they tell me it's not good news, but now I understand what's going on. I can come to terms with it, number one. Number two, you begin to bring in other people who help and support you, which Brent describes. And the fact that it's a religious community isn't the necessity, it's the issue is having a community, secular, religious, whatever it may be. That's number two. Number three, treatment. No question. The data show us that the treatment does affect the natural history of disease, slow it down, and therefore that can certainly translate into less feelings of fogginess, cloudiness, memory troubles, et cetera. Certainly not getting as impaired over time. Number four, I think I'm losing my count. He's no longer working. Remember, his presenting symptoms were challenges. Doing his work. You know, work as a physician is cognitively demanding. You're on message, on task, intensely when you're in the clinic, seeing patients, charting, et cetera, take that away. And that's going to help a mind relax, focus. And so I do have a hunch that his no longer working has probably helped him because he doesn't have the sort of stress, tension, mental demands. In some sense, he was like a guy on a treadmill, running really fast and getting breathless. Number five, he's exercising. I mean, so I think all those factors probably play into what it is like right now for him to be Brent and why he feels the way he feels. I think it's inappropriate to say it's all about the treatment or it's all about not working or it's all about the community he has. I think it's a combination of those. [00:41:51] Speaker B: Yeah. Now, you mentioned the treatment and he has been on lecanemab. He was pretty open about that. But he also talked about these upcoming TAU results and it was a little nebulous in the interview, but we're expecting some information about the effectiveness of these anti tau medications in the future. Can you give us a sort of timeline? What are we expecting and when? [00:42:16] Speaker F: Well, the one drug that has gotten a lot of attention because they presented their phase two results is Biogen's. There's also their Celia study that were presented at the Alzheimer's meetings in London recently in July of this year, and they were certainly a lot of signal there compared to noise. But there's a need for a phase three study that's going to take a couple years to get up running and complete. Having said that, though, there's certainly other tau targeting agents in the works as well. I think the general point I'm getting from Brent is he's following the literature, he's keeping track of things, and he has his eye to the next therapy or the additional therapy he might take. And I think it's an appropriate attitude to have in light of what's happening in the field. [00:42:53] Speaker B: You and I especially talk about the importance of specific words, probably more than most other people in this field. We wish other people would talk about it as much. [00:43:03] Speaker F: Yeah. Words matter, don't they? [00:43:04] Speaker B: Absolutely. And you talked a little bit about. He said. Yeah. And he said he is an Alzheimer's survivor. [00:43:10] Speaker F: Yeah. [00:43:12] Speaker B: Would you say he is an Alzheimer's survivor? [00:43:15] Speaker F: Yeah. It's interesting. The physician in me would. And this has no judgment of him or anything about him that he said. But to say someone has survived a disease, starts to gesture, ideas of cure halting, et cetera. And I think one of the frustrating things in this field is we don't have a biological way yet to say definitively this disease has been halted and stopped. Yes, we can measure the clearance of amyloid and which correlates with and predicts response to therapy. We can measure tau and whether it's building up or not. So we have these measures that are getting there. But I don't have the ability to say to someone, I've done a series of tests and there is no longer evidence that the disease is active in your brain. Will we get there? I do think so. There are measures like mtbr, which gets its progression of tau, for example, which are provocative. Perhaps microstructural measures on MRI might get us there. Some combination. We'll see, of course. Well, what about cognitive testing? If his cognitive testing remains essentially unchanged over time, that would be very compelling as well. We're not seeing a clinical evidence, if you will, as measured by cognitive testing, that this individual is getting worse, particularly after not just 12, 24, 36, 48 months, then you would begin to say, wow, we're just not seeing any evidence of progression, particularly in light of what we know of the natural history of the disease after three, four or five years. And someone like him, who is obviously, I think, diagnosed at the mild cognitive impairment stage of Alzheimer's disease, [00:44:49] Speaker B: that gets to the last word that you had given him. You offered him, my impression was a closing paragraph or sentence and he chose quite literally one word and he said hopefully. You called it, I think, a positive four letter word. [00:45:03] Speaker F: Yeah. [00:45:04] Speaker B: This is after an interview in which we discussed a litany of critiques of the American healthcare system and that he's aware that the drugs will not end his cognitive decline. There's all these reasons for him to not say hope and yet that was how he chose to close out the interview. And what did that leave you with? [00:45:28] Speaker F: I share his hope. I do, I do. I think he's a good example of how to live well with a disease which is difficult to live with. As if any disease is easy to live with. Although certainly some are easier than others. No question. But I don't think his hope is unfounded, wild, irrational. I think his ability to get an accurate diagnosis with good follow up care, access to standard of care, treatment right now for the disease, a supportive community, a family that loves him and cares for him all add up to there's reason to have and to feel that simple emotion of hope. [00:46:06] Speaker B: All right, Jason, well, thank you for your interview and your time today and of course for the prior interview with Dr. Dan Gibbs. What's it like to be Dan? We'll have that episode linked to in our show notes. [00:46:15] Speaker F: Yeah, it's great to be here. Terry. Thanks so much. [00:46:21] Speaker B: Thanks for listening to this episode of the Age of Aging. A special thanks to today's guest, Dr. Brent Beasley. If this episode resonated with you, please subscribe, leave us a review or share it with somebody who would appreciate it. This makes a real difference in helping others find the show. And if you have a topic you'd like to hear, email [email protected] the age of Aging is a Penn Memory center production made possible by generous support from the Michael Nadoff Communications Hub Fund, Lena Chow and the TIAA Institute. Our team includes Morgan Adams, Dalia El Said, Holly Elser, Jake Johnson, Jason Karlewish, Emily Largent and Allison Lin. I'm your host, Terrence Casey.