Neurologist and author Daniel Gibbs, PhD, joins the podcast to discuss his recent book, “A Tattoo on My Brain,” which details his journey from treating Alzheimer’s disease clinically for 25 years to being diagnosed with early-stage Alzheimer’s. Dr. Gibbs discusses early signs he experienced and daily life with the disease, as well as thoughts on the recent FDA-approved treatment aducanumab (marketed as Aduhelm).
Guest: Daniel Gibbs, PhD, neurologist
What inspired the title of your book, “A Tattoo on the Brain”? 1:01
What were these early signs of Alzheimer's disease that you recognized in yourself? 3:42
What were your impressions of the clinic process, and where is there room for improvement? 8:08
Can you share your view on family history? 9:17
What do you say to people about direct-to-consumer genetic testing, both as a recipient and as a clinician? 10:57
Did knowing your risk of Alzheimer's disease help or harm you? 12:42
Did you find any habit difficult to incorporate into your day? 13:17
How important was it for you to be involved in research and what did you gain from being a research participant? 17:15
How do you feel about the recent FDA approval of aducanumab for clinical use? 20:25
As a patient, would you sign up for this drug, and if you were still working as a neurologist, would you prescribe this drug? 22:59
How do you find the balance between enjoying daily life and engaging proactive activities meant to improve the future? 24:49
How can we reframe the way people understand Alzheimer's disease? 28:18
Was it difficult to publicly discuss your experience, and what have you learned from this process? 29:52
What do you hope the reader takes away from your book? 31:15
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Nathaniel Chin: 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.
Our guest today is Dr. Daniel Gibbs, a retired neurologist who spent 25 years caring for patients with Alzheimer's disease. Several years ago, Dr. Gibbs was diagnosed with early-stage Alzheimer's disease. In his new book, A Tattoo on the Brain: A Neurologist’s Personal Battle Against Alzheimer's Disease, Dr. Gibbs uses his unique perspective to illuminate what having early-stage Alzheimer's is like, both from the patient's viewpoint and from a medical angle. Thank you Dr. Gibbs for joining us to talk about your experience and your new book.
Dr. Daniel Gibbs: It’s a pleasure to be here today. Thanks for asking me.
Chin: I'm curious to learn what inspired the title of your book, A Tattoo on the Brain?
Gibbs: You know, it’s funny, the title of the book came to me before I even started writing it. There are really two aspects to it, one figurative and one literal. The literal one is that, as I described in my book, I had an adverse reaction to a study drug aducanumab called ARIA, Amyloid-related imaging abnormalities, and this caused some bleeding into my brain as well as swelling of the brain, and it was fairly severe but I fully recovered from it over the course of several months. The MRI abnormalities all went away with the exception of these little deposits of iron called hemosiderin that came from the blood and hemosiderin is not all that different from the ink that's used by a tattoo artist and that will probably be there for the rest of my life, so in a literal sense I've got a tattoo that will probably will be with me forever. Now, the more figurative sense is that there's a tremendous stigma associated with Alzheimer's as everybody knows. People don't want to talk about it, people who have it don’t want to admit that they have it or they feel uncomfortable talking about it to friends and family, and I'm really on a mission to try and reduce the stigma of Alzheimer's disease and get us talking about it earlier. You know, I don't have any tattoos and though it's been suggested that I should get some — my co-writer Teresa Parker early on was saying "you really need a tattoo," (laughs) my wife killed that idea. But, a tattoo, I think, is a sign of coming out. I mean, people get tattoos because they want to express themselves visually to the rest of the world, and so that's the other sense of A Tattoo On The Brain is, I'm out there talking about Alzheimer's disease, about my experience with Alzheimer's disease and how that may inform the discussion going forward.
Chin: Well thank you for sharing that, and of course we will ask you about, or I will ask you about aducanumab later on in our interview. Before I get to that, your training and experience in diagnosing patients with Alzheimer's disease helped you recognize the symptoms in yourself long before a person not intimate with the disease would have recognized these changes.What were these early signs of Alzheimer's disease that you recognized in yourself?
Gibbs: Well, in retrospect, I think my first symptoms of Alzheimer's occurred more than 15 years ago when I started to lose my sense of smell. At the time, I didn't make that association. About a year after I first noticed it though, I started to have these weird illusory orders that came out of nowhere. They were always the same, the smell of baking bread mixed with perfume and they would last a few minutes or as long as an hour and they were distinctly unusual. They’re called phantosmia. I still had no hint of Alzheimer's disease and I had no family history that was obvious because both my parents died early from cancer. But it wasn't until I accidentally discovered that I have two copies of the APOE-4 allele, which greatly increases my risk of getting Alzheimer's disease and that was discovered when my wife decided we needed to get our DNA tested for genealogical purposes. There was a black box that you had to unlock to get results of two neurological genes, and one was a gene for hereditary Parkinson’s, the LRRK2 gene, and I was interested to think that, maybe I'm going to get Parkinson's because 80% of people with idiopathic Parkinson’s Disease have olfactory impairment — they lose their sense of smell. I was not aware at the time of the association of smell problems with Alzheimer's, but virtually everybody with Alzheimer’s has some impairment of smell, but most don't realize it. And I think the reason that neurologists like me, at least like 10 years ago or 20 years ago, weren't aware of it was because by the time we were seeing patients with Alzheimer's back then, it was late in the disease and patients didn’t mention it and we didn’t know enough to ask about your sense of smell. But, in any case, I didn't have the LRRK2 gene, I didn't have Parkinsons. But I was shocked to see that I had two copies of APOE-4 just out of the blue. At the time — this was in 2012 — I had no cognitive impairment at all. I was still in an academic setting at the time, I was a program director for the Neurology Residency, leading a busy life, and it was a real shock. About a year or so later, I just started to notice some mild cognitive issues that normally would be explained by natural aging. Increased trouble recalling the names of colleagues at times, not all the time, I had moved to a new office and I never could learn the telephone number there or the address, but in fairness I rarely used that landline and I didn't write letters. We were doing emails so that didn’t really bother me at all. But I was concerned enough that I asked a friend of mine who’s a dementia specialist to do some off-the-record testing. I can’t remember the name of the program, but it was a computerized program. I did really well on it. I scored in the 95th percentile in all of the cognitive domains save one, and that was verbal memory and I scored in the 50th percentile. So, the 95th percentile means that I was better than 95% of all the people who took the test, and the 50th percentile was exactly average, so it was still normal but it was very different than the other domains. That was kind of a warning sign that there might be something amiss with that part of my brain involved with verbal memory, and of course, that’s one of the first parts of the brain that is attacked in many, if not most, people with Alzheimer’s Disease. Within a year of that I did retire because I wanted to stop practicing medicine before I got into trouble cognitively.
Chin: Well just now and in your book, you talk about how most of the patients you were seeing in clinic already had moderate to severe stage dementia when you diagnosed them. You, on the other hand, were at the opposite end of the spectrum when you were diagnosed. So, what were your impressions now from the patient perspective of the clinic process in being evaluated and where do you think there's room for improvement?
Gibbs: I would say that even at that time, the time I was starting to see a dementia specialist in 2014/2015, there still was this attitude that I certainly had as a neurologist early in my days of trying to reassure people that “no, everything's okay, don't worry about it”. And I understand where that's coming from because in the early days of my practice we had absolutely nothing to offer people with dementia. And so we tried to reassure people that, well, maybe you have Alzheimer’s Disease but, you know, maybe you don't, and don’t worry about it. But things have changed and I have to say that I got a little frustrated that I was acing all these tests, but I still had things that I noticed as cognitive impairment.
Chin: Now you have this beautiful chapter on family and the need to look beyond DNA when it comes to diseases like Alzheimer's disease. Can you share with our audience your view on family history?
Gibbs: Yeah, I mean, family history is not just your genes. I mean that's a big part of it, but family history also is how we’re raised. For example, a big part of our resilience against Alzheimer's is - and this is a little controversial - this concept of cognitive reserve and it's something that we build up from childhood on and it is greatly influenced by our family. In my case, my father was a real mentor in developing my interest in science and expanding my brain; we went to lectures at Caltech together every week when I was middle school, the public lectures. And my mother was an amateur musician and I really learned my love of music from her. So there are things that you get from your parents, obviously more than just the genes they pass on, and that's a really important part in mitigating some of the effects of the Alzheimer's process.
Chin: It’s a very holistic approach to viewing something called family history, and I appreciate that.
Chin: You also found out about that increased genetic risk of developing Alzheimer's disease really based on a commercial, direct-to-consumer ancestry product. It was not your anticipated purpose when you got it. So in essence you received no genetic counseling or preparation before learning this information, other than really clicking that box that you described. So what do you say to people who are considering direct-to-consumer genetic testing, both as the recipient of this, learning something quite significant, but then also as a provider, a neurologist who might have had patients coming in who have done something similar to you?
Gibbs: I strongly oppose the direct-to-consumer testing in the absence of counseling. I would urge people to - if they’re interested, by all means get tested - but do it in conjunction with someone who can advise you on the risk. For example, when I first got my results back in 2012, there was a bulletin board - I don’t know if that’s the right term to use - for people who had APOE-4 could discuss their feelings; it was part of this genetic testing company. There was a woman who had found out that she had one copy of APOE-4 and she was so upset that she was considering committing suicide. And I was just appalled, and I never do social media but I jumped on and I said ‘Hold on a minute. Your risk is slightly increased, but you’re probably much more likely to die without Alzheimer's disease than with Alzheimer's’ and, you know, hopefully that made a difference. But people need to know. Certainly if you have two copies your risk goes up considerably but with one copy it doesn’t, it goes up maybe twofold. And people need to understand those sorts of things and how it should influence or not influence the way you approach life.
Chin: For you, did knowing your risk of Alzheimer's disease help or harm you?
Gibbs: Oh I think it helped, because it allowed me to be more proactive about getting a diagnosis and then trying to do what I could to mitigate my risk.
Chin: And certainly you have made a lot of changes or at least enhanced some of those lifestyle habits in your book. It’s the same habits, of course, that we cover on this podcast. One of which or two of which you describe so well in your book is physical activity/exercise and a healthy diet. Did you find any particular habits to be difficult to incorporate into your day?
Gibbs: Yeah that’s an interesting question, and the answer is no. Exercise, you know, I’m retired now so I have plenty of time to exercise. That is so important. The data is best for exercise for lowering the risk of getting Alzheimer's and slowing the progression than for any of these other things. I don't mean to minimize the other things, but the data for exercise is unimpeachable, at least in the early stages of the disease. The only good studies that I’ve seen that do not show a benefit from exercise are those done in people with advanced disease. At that point, the horses are out of the barn, the nerve cells are dead, and exercise can do good things at that point — increase sense of well-being and immobility - but it doesn't seem to have an effect on the progression of the disease. But if you start it early, and by early it’s looking like midlife is the target time. And that's hard because that's the busiest time of our life. You know, we’ve got kids, we’ve got work, we’ve got dreams. And this is where knowing your risks can be helpful. People say ‘well, who cares about whether or not you have risk factors for Alzheimer’s. Just go ahead and start exercising and eating well’. But I have to say finding out I was an APOE-4 homozygote, meaning I had two copies, gave me a big kick in the seat of the pants to get motivated to do these things. I really can't emphasize that enough.
So exercise for me was not a difficult thing to take on. I had plenty of time to do it, and frankly I feel not only physically better, but mentally better after exercise, and there’s data to support that that you get an acute boost from exercise as well. Now, diet is an interesting thing as well. The diets that are recommended for Alzheimer's are Mediterranean style — I go into a variant of it called the Mind diet - and a lot of what is in these diets are the sort of green, leafy vegetables that a lot of people think they don't like because they have a bitter taste, like kale. I have no problem with that because with my loss of smell, I have virtually no sense of taste so everything tastes the same to me. I have no trouble gobbling down kale, I can eat it raw and I actually kind of like that their a flavor now because it's something I can taste. I guess, ironically, it's easier for me to chow down on some of these things that - was it George Bush or Bill Clinton that didn't like broccoli I can’t remember - that famously people turned their noses up are not hard at all. You may have that to look forward to as you develop Alzheimer's Disease, you're less discriminating about what you eat.
Chin: I suppose that’s a positive perspective. (laughs) Thank you for sharing that!
Gibbs: You know, the other thing on that, I do like to have a glass of wine with my dinner, which is okay. But I don't have to spend a lot of money on good wine anymore because I cannot tell the difference between a really fancy wine because I can’t smell it, I can’t smell the aroma. My only cut-off is the acidity. If it's really acidic, I don't like that. But I don't spend a lot on good wines.
Chin: So you sound like a cheap date, is what it sounds like?
Gibbs: I am, I am.
Chin: I’m sure your wife appreciates that.
Chin: And after you retired, you actually became quite involved in Alzheimer's disease research as a participant. And so how important was that for you to be involved in research, and what did you gain from being a research participant?
Gibbs: It's a big part of my life now. I've been in, I think, four studies now and I screened for another one which I failed to get into that was the one of the TAO monoclonal antibodies because I wasn't cognitively bad enough. I would say that's their loss, because they'll probably wanted to give people like me sooner rather than later, because I think the sooner you start these things the better. The first study I was in was a longitudinal neuroimaging study looking at a then experimental TAO PET scan tracer, which has now been approved but back then it was experimental, and looking at what happens over the years with people who are at risk for Alzheimer’s Disease. I started that in 2015 and then had all the scans repeated in 2018. And that was really fascinating being able to see the - I had TAO pet scans, I had amyloid PET scans, MRI scans, I had an FDG PET scan which we don’t use too much anymore - but being able to see the changes that occurred in my brain. For example, when I first looked at my first amyloid PET scan, my eye was really drawn to amyloid deposition in the area of the piriform cortex and the medial orbital frontal cortex which are both important areas for olfactory processing. I thought that was pretty cool to see that correlate with some of my olfactory issues. The major study I was in was the aducanumab engage trial. I loved doing that. I had to travel from Portland down to San Francisco at least once a month, but that was kind of a fun thing. I made a day trip out of it. I got the 6 o’clock flight and got up to the area around the campus at Mission Bay San Francisco in time to get breakfast at my favorite coffee shop there. Then my infusion would start usually at noon and then I’d get a late afternoon flight back to Portland. It was a lot of fun. I met some great people and I made friends in the research center there at UCSF, UC San Francisco, and it was a great experience. I really liked that. The other two studies that I was in were for more minor things, you know. The testing of an activity tracker, a cognitive tracker, comparing it to activity levels. And then testing the new - I shouldn’t say new, it’s thousands of years old - the possible herbal remedy frame for Alzheimer’s Disease in the Phase One study.
Chin: You really used your diagnosis, your symptoms to become an advocate of Alzheimer's Disease research, to really promote the importance of research, which I think is evident in your book as you describe it. I think I have to ask you now, with the recent FDA approval of aducanumab as a clinical treatment, not for research purposes, how do you feel about that decision?
Gibbs: Well I have mixed feelings. I have two hats; I have the person with Alzheimer's hat and then I have the neurologist hat. With the person with Alzheimer's hat, I'd have to say I'm pleased that there's been approval of the first disease-modifying drug for Alzheimer's that has been shown to reduce amyloid in the brain and seems to slow cognitive impairment in some people. Wearing my neurologist hat, I'm not as enthusiastic. I think there are a lot of issues with the FDA approval. There were two identical trials. One was positive. One was negative. After the fact, a reexamination of data, which is statistically - I shouldn’t say bogus but it’s fraught - really doesn't fully explain the discrepancy. I pretty strongly feel there should have been a requirement for a third trial before approval. I know this is controversial. I also worry that the drug will be misused. It has only been tested in people with early disease. There’s been no studies that I know of in late disease, but I'm afraid it'll be used inappropriately in people with late disease. I think that could be disastrous because I think side effects are likely to be much greater in people with advanced disease. We haven’t really talked about ARIA much, but ARIA, it is the swelling of the brain or bleeding to the brain that occurs frequently in these trials but is usually asymptomatic, doesn’t usually cause big problems but it can cause problems. It's thought to be due to amyloid in the walls of blood vessels in the brain that occur in most people with Alzheimer's disease, called amyloid angiopathy. The antibody attacks that amyloid in blood vessels as well, causing them to leak. In older people who have more fragile blood vessels and will have a lot more amyloid in the end stages of the disease, I think that you would see not only microhemorrhages but probably more significant lobar hemorrhages in the brain. I’m very concerned about it being used outside of a research study in people with advanced disease.
Chin: If I may ask you, Dan, as a patient, would you sign up for this drug, and then if you were still in clinical practice, would you prescribe this drug?
Gibbs: Well, as a patient, I wouldn't because I had a very serious response to it. So there's something about my blood vessels that makes them leak in response to even a very low dose. I had ARIA after getting just four doses of the drug, and only reached three mg per kilogram. The dose that will be used is ten mg per kilogram. There’s something about - I probably have amyloid angiopathy out of proportion to the amyloid plaque burden in my brain, so I would not be a good candidate for this. In fact, there’s another drug that I'm very high on, this lovely drug - I can’t remember the name of right now - that I think that's a lot of promise and I hope it gets approved as well. I mean, I hope the studies are done that give us the data to approve it, but it looks promising. But I don't think I would take that either because I think I would be at risk for a severe hemorrhage as well. I don't know if that answers your question. Now as a doctor would I prescribe it? I think I would prescribe it to someone with early-stage disease if they wanted it, but not to people with advanced disease.
Chin: Thank you for sharing that. I know I put you on the spot with that but I appreciate your perspective, both as a neurologist and as a potential patient. In your book, you wrote about the importance of living in the moment each and every day. You also adopted, as we talked about, those very brain healthy habits in hopes of slowing the progression of the disease. How do you find the balance between enjoying daily life and engaging in proactive activities meant to improve the future?
Gibbs: I don’t know that a balance is, it's one or the other. I mean, it's all part of the same thing so I have no trouble with doing the things that I need to do to help protect my brain because I enjoy doing them now. Eating I don't enjoy all that much but I don't hate it. I just do it. But the exercise, I really do. Even my dog now, Jack, who features in the book, he’s my walking companion, but you know he's getting middle-aged and sometimes he’s not as enthusiastic as I want him to be. I had to trick him into going up to the woods yesterday. We ended up having a great walk but he started to put on his brakes at the end of our block. I took him on a different route to get to the woods. We had a good almost three mile walk. But more and more I'm taking walks by myself because I want to make sure I get enough - I try for 15,000 steps a day and go for a minimum of ten thousand and nobody knows what the exact amount is. You know, it is important that you get your heart rate up so just walking, you know, casually is maybe not enough. We walk in the hills and I have a fitness tracker and I make sure that my heart rate is up. Oh, I’m getting lost on where we were going on this.
Chin: Actually, that was exactly what I was hoping you were going to say, which is that really these healthy habits of exercise and diet and sleeping and brain stimulation and being social, that you actually enjoy them too.
Gibbs: Yeah no, absolutely. Now, I have to say that the social part is the hardest because, as you well know, apathy is a big problem with Alzheimer's Disease. Even in the early stages, I can feel my apathy. I think that probably is because one of the first areas that gets hit in many people with Alzheimer's is the prefrontal cortex, and that’s an area of our brain where we make plans, it’s our motivating part of our brain, and I just have trouble getting off my butt and wanting to do things. And, you know, the pandemic has been kind of a gift, in a sense, because I have an excuse not to go to parties. That's the other thing I don't like for a number of reasons now. I’ve never been particularly social. But, in a social group before the pandemic, it was very hard for me to be in a room with multiple people talking because I couldn’t compartmentalize the conversations and I couldn't understand anything so my filter wasn't there. So I do have trouble with the apathy, and I have to make a point of interacting with people. That's getting easier in the sense now that the pandemic restrictions are easing. At least we get to see our kids and grandkids. (laughs) I've got a two-year old downstairs you know who I hope is staying quiet.
Chin: In one chapter, you wrote about the fear of Alzheimer's disease and the power can have over us. You describe a woman you saw in clinic who took her own life because of her diagnosis, and in the chapter you share that people often think about the end stage of Alzheimer's disease when they think about the disease itself, without recognizing the early stages of the disease. How can we reframe the way people think about Alzheimer's disease and emphasize the opportunities to live life in the earliest stages and live it to the fullest that we can?
Gibbs: Well, I think this is really, really important thing, because my goal in life is to live long enough with a healthy brain that I die of something else before I die of Alzheimer's disease. And I'm not being facetious. That's what I mean. Because even with the things we have now, my brain is going to continue to deteriorate as the years go on, but if I can slow that process then something else will get me first and that's what I want. It sounds kind of gruesome. But I think we need to focus on the decades before the end stage of the disease when we have pathology in our brain, but we don't know it yet and try to do something to slow the progression of that neuropathology before it becomes symptomatic and then once it becomes symptomatic, before it gets disabling.
Chin: I appreciate that response, Dan, and as a geriatrician, I don't think it's gruesome at all. To me, it shows your view on life and quality of life as well as your acceptance of mortality, which I think is a healthy thing and needed in our time. You've intentionally shared your story publicly, both in the news and in this book. Was that a difficult decision and what have you learned in this whole process?
Gibbs: No, it wasn’t difficult at all. Really from the get-go, I really want to get to word out because I had this, if not unique, unusual dual view on Alzheimer's as both a neurologist and as someone who has the disease. And I have to thank Dr. Gil Rabinovitch at UCSF who was the first one who urged me to write about my dual viewpoints on Alzheimer's. I did that in a paper in JAMA Neurology a few years ago, and it got a fairly good response, both from neurologists and the public. The whole idea was to change the emphasis on how we view disease, Alzheimer's disease, into the whole spectrum of the disease and focus on what we can do with early recognition and management. I strongly feel that that's going to be the future of controlling Alzheimer’s Disease. We're not going to cure it in the end stages. We've got to get it in the early stages, slow it down, reverse it if we can before a lot of brain cells have been killed. That's the time to intervene.
Chin: My last question for you, Dan. What do you hope the reader takes away from this book and your story?
Gibbs: Well, I hope that they carry away that Alzheimer's doesn't have to be that scary. And, I think if you approach it with what can I do to minimize my risk and slow progression and become proactive, that in itself is a healthy psychological medicine for you. It makes it easier. You're less helpless. You actually have a way of fighting the tiger, and it just improves your quality of life as well as prolonging your life.
Chin: Dan, thank you for coming on Dementia Matters today and talking to us about your book, A Tattoo on the Brain: A Neurologist’s Personal Battle against Alzheimer's Disease. I must tell you I greatly enjoyed reading it and I hope our listeners do too. Thank you again for your time and perspective.
Gibbs: Thanks very much for having me. I enjoyed it.
Chin: Thanks for listening to Dementia Matters. Be sure to follow us on Apple Podcasts, Spotify, Google Podcasts, or wherever you get your podcasts to be notified about upcoming episodes. You can also listen to our show by asking your smart speaker to play the Dementia Matters podcast. And please rate us on your favorite podcast app -- it helps other people find our show and lets us know how we are doing.
Dementia Matters is brought to you by the Wisconsin Alzheimer's Disease Research Center. The Wisconsin Alzheimer's Disease Research Center combines academic, clinical, and research expertise from the University of Wisconsin School of Medicine and Public Health and the Geriatric Research Education and Clinical Center of the William S. Middleton Memorial Veterans Hospital in Madison, Wisconsin. It receives funding from private university, state, and national sources, including a grant from the National Institutes of Health for Alzheimer's Disease Centers.
This episode of Dementia Matters was produced by Rebecca Wasieleski and edited by Caoilfhinn Rauwerdink. Our musical jingle is "Cases to Rest" by Blue Dot Sessions.
To learn more about the Wisconsin Alzheimer's Disease Research Center and Dementia Matters, check out our website at adrc.wisc.edu. You can also follow our Facebook page at Wisconsin Alzheimer’s Disease Research Center and our Twitter @wisconsinadrc. If you have any questions or comments, email us at email@example.com. Thanks for listening.