Changing the Narrative: One Man’s Journey to Alzheimer’s Diagnosis and Treatment

Transcript

Intro: I'm Dr. Nathaniel Chin, and you're listening to Dementia Matters, a podcast about Alzheimer's disease. Dementia Matters is a production of the Wisconsin Alzheimer's Disease Research Center. Our goal is to educate listeners on the latest news in Alzheimer's disease research and caregiver strategies. Thanks for joining us. 

Dr. Nathaniel Chin: Welcome back to Dementia Matters. Today, I'm joined by Mike Zuendel. Mike is an advocate for Alzheimer's disease early detection and treatment. Having a family history of Alzheimer's disease, Mike sought out evaluations and was diagnosed with mild cognitive impairment (MCI) due to Alzheimer's disease in 2020 before undergoing treatment, being one of the first patients to be prescribed aducanumab clinically. He served on the National Early Stage Advisors Group of the Alzheimer's Association, the Global Neuroscience Patient Council, and the Voices of Alzheimer's Organization, as well as sitting on the Alzheimer's Patient Advisory Board for the Center for Information and Study on Clinical Research Participation and the Board of Directors for the Banner Alzheimer's Institute Foundation. Mike is also the founder of the Initiative to Change the D Word, an organization that seeks to reduce stigma and increase accuracy around cognitive impairment by stopping the use of the word dementia and similar words like demented. Mike joins me today to share his powerful story of seeking a diagnosis and treatment, dealing with stigma and denial and more. Mike, welcome to Dementia Matters.

Mike Zuendel: Well, Nate, thank you very much. I'm super happy to be here. I'm super thankful that you gave me this invitation to come speak and share my story, which is somewhat unique—maybe—and hopefully, maybe, not so unique.

Chin: Well, Mike, we met each other at a very important conference on Alzheimer's prevention. After hearing you talk, I immediately wanted to share your story with our listeners. I was excited to meet you. We had met each other earlier in the elevator, and I know you and your wife call me the elevator guy, which I'm happy to be known as. The irony is not lost on me that, of course, you're on a show that's titled Dementia Matters. I know you don't particularly care for that word, but I thank you for being here. I really want to get into it because you have a lot to say today. To begin, can you tell us how your journey with Alzheimer's and cognitive impairment started? I know your story doesn't really begin in your geriatrician's office. Perhaps you can share what you first noticed that led you to start thinking something might be wrong.

Zuendel: Well, yeah, that's a very good question. Both of my parents had Alzheimer's disease and passed away from Alzheimer's disease, and I was their caretaker. That was in the back of my mind. I was worried that maybe I would also be affected. I wanted to get tested, but I was afraid to get tested and I put it off. I finally did get tested and it wound up I had mild cognitive impairment due to Alzheimer's disease. I started noticing my symptoms were word-finding, short-term memory loss, placing articles down and not being able to turn around and find them again. They weren't really obvious except to me because when you start thinking about if you may have this disease—I know there's a technical term for it—you kind of become hyperaware of everything you do. Some things were absolutely normal and some things weren't quite so normal. I kind of had the feeling that things weren't quite that normal before I sought out my early detection.

Chin: We hear this in our own center, the Wisconsin Registry for Alzheimer's Prevention. We have a lot of participants who have family members with Alzheimer's. There is this hypervigilance, this sense that they are noticing things that others might say, "Oh, that's just a normal part of aging." But they're aware of this. Usually, they say to me, "Well, there's something that just triggered me that said, no, this isn't just me being aware of it. This felt like something was different." Did you have that sort of moment, or did you feel like it was just enough time of saying, "No, I really do need to go in"? Did something finally prompt you to see the doctor?

Zuendel: Yeah, we all go through life, and we have certain things that happen that change the course of our life. Some are big events and some are really small events. The event that changed my life was a relatively small event. I could not find my cell phone, which was becoming a daily occurrence. I thought, "Well, I'll go down to the garage and see if I left it in the car." I went down to the garage. It was not in the car. I came back up the stairs—I have five flights of stairs in my house. I came back up the stairs to my office, could not find my phone. Went all the way up the rest of the stairs to my bedroom, could not find my phone. Figured maybe I left it in the kitchen—went down to the kitchen, could not find my phone. Finally, getting frustrated, I asked my wife. I said, "Brooks,”—my wife—”would you please call my phone so I can find it?" My phone rang, and it rang quite loudly because I had been holding it in my hand the whole entire time. That's when I said to myself, "Mike, okay, this is a sign. It's time to get serious." That was the turning point in my life when I finally decided to go and get a proper diagnosis to see what was going on.

Chin: What did that evaluation look like? Did you start with your primary care doctor? You mentioned to me before this recording that you were in your geriatrician's office. Is your geriatrician your primary care doctor?

Zuendel: She sort of is now. No, I live in a very small town. It's only 10 blocks wide and six blocks long. We have two primary care physicians in town who are vastly overloaded with work and have to take care of everything from soup to nuts. I expressed my concerns to them for many, many years, and they really didn't have an answer. Their answer was to "eat more kale," which is actually good advice, but that was sort of the extent of it. I decided that I had to take my health care into my own hands. I wound up at the Banner Alzheimer's Institute to get diagnosed. From there, that's sort of how it all happened.

Chin: If you don't mind sharing with our listeners, what was that process like for you? Did you go through pretty extensive thinking tests and blood tests? Ultimately, did you get some of the fancy amyloid PET imaging? How did you come to the diagnosis of mild cognitive impairment and then being told it was Alzheimer's disease?

Zuendel: After my first appointment, which was an initial appointment, they diagnosed me with memory loss. They wanted me to come back for a more significant diagnosis to discover the extent of it and how much. The second and third appointments were much more extensive. They involved a three-and-a-half hour neuropsychological evaluation, an MRI, and a beta-amyloid PET scan. From the results of those, at that point in time, they were able to make a diagnosis of Mild Cognitive Impairment due to Alzheimer's disease.

Chin: I'm presuming at this point you didn't have as much knowledge about the words dementia, cognitive impairment, and Alzheimer's as you do now. At that point, were you fully aware of the differences between mild cognitive impairment, dementia and Alzheimer's disease, or was this all a new learning curve for you?

Zuendel: Because I'm curious by nature and because both of my parents went through Alzheimer's at different periods in their lives—so it was probably about 15 years, I think—I had already done a lot of general reading. I was pretty aware of what those diagnoses and phrases meant. However, I did do a deeper dive to figure out what mild cognitive impairment was. It's interesting because we had to submit it to the insurance company and the first time they denied it because we didn't say "due to Alzheimer's disease." Mild cognitive impairment can be caused by a lot of things—trauma, head injuries, etc.

Chin: What did that mean to you, then, when you heard the term mild cognitive impairment first?

Zuendel: The first time I got my official diagnosis, I thought I was fairly prepared for it. Actually, the way I found out was on a weekend when I was by myself for a short time. I went to the portal on my computer and there was the diagnosis from my neurocognitive exam. Then, there was also the diagnosis from my brain scan that said, if I can remember, "my brain showed a pathological accumulation of beta-amyloid plaque throughout my brain, including areas of loss of the gray-white matter border." It hit me like a ton of bricks. There were a lot of tears with my family that weekend. We kind of expected it, but when you really hear something like that, it just—it hits you in the gut. Then after that you have to pick up the pieces and figure out, what am I going to do now?

Chin: We often talk about how neurodegenerative conditions like Alzheimer's disease have a lot of stigma associated with them. Of course, this is something you are an advocate for—addressing stigma. Did you find this to be the case for you as you were going through this process when you learned about Alzheimer's disease? How do you feel like it impacted your journey?

Zuendel: Well, it impacted the journey very, very much. That first weekend, I got my family together and we talked about the diagnosis. I told them one thing—that I was going to survive this disease. I didn’t know how, but I was going to survive this disease. I told them not to worry. The other thing I told them, after thinking about it for a day or two, was that I did not want to hide this from the public or my friends. I wanted to go public. They were concerned about me going public because they didn’t want people to look at me differently. This would affect them also because they’re my family, and everyone was going to know their dad has been diagnosed with mild cognitive impairment. I wanted to do that, but I figured out I was afraid to go public because of the stigma but I had to go public because of the stigma, to fight the stigma. One of my daughters spoke up and said, "Dad, if you don’t do this, who will?" You really can’t deny a request like that from your daughter. From that, that was the starting point in my journey to where I wind up on a podcast at the University of Wisconsin.

Chin: Well you didn't stop there, though, in addressing just the stigma. You then sought out treatment. Can you share with us then, I mean, you got diagnosed at Banner, but you didn't just stop with the diagnosis. What did you do next when it came to interventions?

Zuendel: When I got my diagnosis, it was before aducanumab, Aduhelm, had been approved. About four or five, six months after I got my diagnosis, the drug got approved, and I wanted that drug and I wanted it now. I had never been in a trial. I had a great team, and they did a lot of work for me to get this disease-modifying treatment started. That wasn't easy, but that took four, five months. I did get started then on Aduhelm. I took monthly IV infusions for 36 months, which I have now stopped and am going on to another medication. I was determined to get this drug. Through my journey, one thing I found out is you really have to be your own advocate. You need to sit down and talk with your physicians and tell them what you want and then they will tell you what's available and what the consequences are, pro and con. I really believe that they allowed me to make my own decision after being fully informed.

Chin: How did you feel about doing it? Because I know that they provided you the risks and the benefits. They told you about the monthly infusion, the potential for the ARIA–the amyloid-related imaging abnormality, the bleeding, the swelling. Were you worried? Were you excited? Were you hopeful? I mean, you must have gone through a lot of emotions thinking about this process.

Zuendel: I wasn't worried. I was extremely excited. I couldn't wait. We have a picture that was in a lot of newspapers of me getting my infusion with my family all around me. They're all cheering with their hands up in the air. Before that, there was a lot of controversy or awareness that there are possible side effects with this drug. It was totally explained to me. I understood those side effects. My thought pattern–and I'm just one individual–but my thought pattern is after being a caretaker to my parents and listening to my physicians, I knew of the slight possibility of having side effects from these infusions. I also knew what the certain side effects are of having Alzheimer's disease. I was ready and willing to take the possible side effects of the infusion over the certain side effects of going down the road of having Alzheimer's disease. To me, it was not a hard decision at all. I was wanting this drug. I was wanting to stop this disease in its tracks. The other option is not to stop it in its tracks. To me, that's not an option. Everyone's different, everyone's unique, and some people worry about things that other people don't worry about. I was thrilled. I was fighting to get this drug.

Chin: Something that I don't think many people get to hear about is actually what the process is like, not necessarily the drug itself, but going to the infusions. We know that there are multiple MRI scans that you have to get at certain intervals. What was that like for you? Was it a tiring process? How did you keep track of all these multiple different appointments?

Zuendel: Well, I have a great support person. Her name is Brooks, and she's my wife. She really keeps track of everything. The process itself was quite simple. The only difficulty for me was the nearest place was 300 miles away, 400 miles away. We solved that issue. The process itself is quite simple and quite easy. You go in, they sit you in a nice comfortable chair, and you have a nice TV, and you sit back, and they start an IV in you. After they get it hooked up, they start the drug. It takes 60 minutes for this drug to get into your body, and then it's done. Then they take the IV out, and you hop up and you go home. I didn't feel any different. I didn't feel any side effects. I didn't feel any nausea. I didn't feel anything. It was just an hour, hour and a half getting ready, sitting in a chair, having an IV in you. The actual procedure is, I don't want to say harmless but there wasn't anything to it. Just getting there, getting to the clinic, and getting to the infusion center and back home was the toughest part. Then making sure my schedule next month was set. We always had to work around that, but that's nothing. I mean, what, I'm not going to go get my infusions because it might get in the way of something else? That's my number one priority. You just make it happen.

Chin: Then you got the MRI scans at whatever the interval was. Did they ever find anything on those scans? Were you someone who developed any of those asymptomatic ARIA findings?

Zuendel: No, I never had any ARIA findings. I had the scans. I think they had on schedule that you take one before you start. Then I think one at three months and one at five months or seven months or something like that. They're very, very on top of monitoring the patient. I felt like I was being monitored quite closely. We never found any evidence of ARIA or anything. I never got as much as a headache. I'm just one individual, but for me the experience was pretty darn easy. I mean, yeah, it takes time but it's a health condition, right? Your life's gonna be changed a little bit in terms of your scheduling, but so what, big deal. This is what we do.

Chin: You made it clear that this was a priority for you and you were willing to make the time investment into doing it.

Zuendel: Yes. Not having Alzheimer's is a priority for me. I look forward to one day when I think–I hope I may be close to it, I don't know–I can say I used to have Alzheimer's disease.

Chin: Well, and actually that speaks to my question of, and you shared this at the conference, what was the result of your amyloid PET scan and then what did the treatment do for you? Because you know this information.

Zuendel: After 36 monthly infusions with aducanumab, my doctor has told me that I have had a miraculous recovery from the removal of beta-amyloid plaque from my brain. I don't kid myself. I still have impairments, I still have damage that was done. Hopefully that damage will not get any worse. Hopefully it'll stay the same and it could get better. We don't know. I'm sort of in uncharted territory on this. This is like the beginnings of chemotherapy. That was the result. If there's any scientists listening to this, my centiloid score in the very beginning was 70. After two years it dropped down to 14. After the third year it dropped down to 3.6, which I'm told is totally normal.

Chin: Yeah, that's incredible. That's really incredible, Mike. How are you feeling now? You mentioned you're still having symptoms, but how do you feel like you have been doing now compared to when you started treatment?

Zuendel: This is very interesting. When I first went to my physician, my geriatrician who's a specialist in Alzheimer's disease patients, I asked her, “How long before you think I'm really going to be symptomatic?” She said about four years. It's been almost five years since I've been diagnosed. I've taken all these neurocognitive tests. They all show that I have remained very stable over these five years. I feel personally that I've leveled off. I don't feel I'm getting particularly better, but I don't feel I'm getting particularly worse. If I have to live with these symptoms of some word-finding and misplacing my phone and walking in the room and kind of having to think for a second that's fine with me. That's an easy life compared to some other really nasty diseases that really debilitate you. I function normally. I travel normally. I'm on my own. I'm completely independent. I have a business with nine employees that I'm the head of. I have a nonprofit that I run. I'm not saying this to brag, but I'm living a completely normal, productive, functional life with Alzheimer's disease.

Chin: What does this experience of having monoclonal treatments available mean to you? When people ask you, “Oh, these new novel treatments are available,” what do you say to them?

Zuendel: Well, it saved my life. I wouldn't be here. I don't think I'd be able to sit here and talk to you, Nate, had it not been for this first round of monoclonal antibodies. I'm fairly certain of that, because I know what my plaque burden was. I know what my tau presence is. I am so fortunate that I caught this disease early. Because if you wait until symptoms appear, I'm so sorry but the current medications are only meant for mild cognitive impairment. When symptoms appear–and you're the expert on this, not me–but when the symptoms appear or are getting sort of bad you're probably fairly along the spectrum, if you call it a spectrum, of the disease. They've saved my life through my own initiative. I got early detection and I'm good to go.

Chin: When we met each other, we were at that conference talking about prevention, Mike, and treatment. At one point in this discussion, there was this point of “The field needs to be moving towards a cure.” You shared your perspective with the researchers and doctors in the room. I'm hoping you don't mind repeating what you said for our audience today because I feel like it's not mentioned often enough or it's just not mentioned that commonly about cure versus stability. Do you mind sharing how you feel about that?

Zuendel: No, not at all. Great question. I felt really bad when Aaducanumab first got approved because the headline said “Alzheimer's Drug Approved, But Not a Cure.” Every article ledwith “not a cure.” I think that was too bad because we should have been celebrating and shouting from the top of the roof that we finally have a treatment. We do not have a cure for AIDS. We don't have a cure for the common cold. We don't really have a cure for cancer, but we have some incredible wonderful treatments. All I want is to be treated to stop the disease in its tracks. I think we need to get away from labelling this as being a cure or not being a cure. What we have are good treatments, and they're going to get better and better and better.

Chin: Earlier you had mentioned feeling like we're at a place where we were when chemotherapy first started. We're at the beginning of something that will hopefully continue to get better and better and more and more impactful. Is that how you feel? You feel like this is the beginning and that the treatments–that you are at the beginning of what will be truly meaningful therapy for the next 10 years?

Zuendel: Do I feel that way? Yes. I know that because I'm told I've only one of a small sample of maybe a few hundred that have progressed this far on the treatment, but we have to start someplace. I do some speaking and one thing I say is I don't have time to wait for the perfect research. I have plaque building up in my brain and my clock is ticking, and every day it ticks a little louder. Allow me as a patient in consultation with my neurologist to make my own decision. That's sort of how I feel. We're at a point here where we can't wait. Every day, 2,000 people go from mild cognitive impairment to moderate cognitive impairment. Every day we're losing 2,000 people to this disease. The whole part of this is we've got to get treated. We've got to get treated early. We have to get diagnosed early.

Chin: As an advocate in the field, what is your advice for those who are starting to experience memory or thinking changes? As someone who himself went through this process, what do you say to people?

Zuendel: I would tell them you have to find a specialist who is up to date on the treatment. The general practitioners are flooded and don't have enough time. I would seek out the best specialists you can find. I would not be afraid to find out. The longer you wait, the more the chances go down of you being successfully treated. I would say, don't worry. Do not let this disease define you, change yourself or push you into a corner. You have to fight the disease. There is hope. There is real hope. There is great hope. It won't happen unless you get diagnosed. Take that step. I know it's a hard step. I know it personally. I know it took me five years. It's a hard step to do but you gotta do it and you gotta do it now. You're going to be okay and you're going to be fine and your life's not going to be turned upside down. As a matter of fact, being on monoclonal antibodies has given me great hope. I mean, super great hope. I'm happier, happy as heck, because I started this.

Chin: Then for those who are now patients and they've been diagnosed with a form of cognitive impairment and they're considering, what do I do next? What about these biomarkers and these treatments? What type of advice do you have for them?

Zuendel: Very similar advice. I guess one advice that someone gave me, and this is interesting, because having this disease, to be quite honest, is frustrating. That's the biggest emotion I feel is frustration throughout the day. I'm with friends and I kind of grab a word and I don't, and I can't think of something and I get frustrated. A friend of mine who had already been diagnosed gave me some great advice after I'd been diagnosed. He says, don't be too hard on yourself. Just don't be too hard on yourself. You're going to have moments of frustration and just give yourself a break. I guess maybe that’s the answer to your question

Chin: Well, with that, Mike, I'd really like to thank you for coming on the show and sharing your personal story, not only about the things that have happened to you but about really your opinions on what is really still a hotly debated topic within the field of Alzheimer's disease. You've made it very clear this is your own opinion. I appreciate your willingness to put yourself out there and express that, so thank you for coming on today.

Zuendel: Nate, thank you very much. It's people like you who’ve dedicated yourself to making life better for millions of people. One thing I've been blessed with during this journey is I've had the chance to meet people like you, some brilliant people who are working night and day to solve the puzzle of this disease. Now that I've been involved in it and know these people, you and your friends and your colleagues are super dedicated. My heart goes out to you. My total gratitude from me and my family goes out to you and your department and everything you guys are doing. You guys are just awesome.

Outro: Thank you for listening to Dementia Matters. Follow us on Apple Podcasts, Spotify or wherever you listen. Or tell your smart speaker to play the Dementia Matters podcast. Please rate us on your favorite podcast app. It helps other people find our show and lets us know how we're doing. If you enjoy our show and want to support our work, consider making a gift to the Dementia Matters Fund through the UW Initiative to End Alzheimer's. All donations go toward outreach and production. Donate at the link in the description. Dementia Matters is brought to you by the Wisconsin Alzheimer's Disease Research Center at the University of Wisconsin-Madison. It receives funding from private, university, state and national sources, including a grant from the National Institutes on Aging for Alzheimer's Disease Research. This episode of Dementia Matters was produced by Amy Lambright Murphy and Caoilfhinn Rauwerdink and edited by Eli Gadbury. Our musical jingle is Cases to Rest by Blue Dot Sessions. To learn more about the Wisconsin Alzheimer's Disease Research Center, check out our website at adrc.wisc.edu. That's adrc.wisc.edu and follow us on Facebook and Twitter. If you have any questions or comments, email us at Dementia Matters at medicine.wisc.edu. Thanks for listening.