Daniel Gibbs dedicated his career as a neurologist to the study of Alzheimer’s and care for patients living with the disease. Then he was diagnosed with Alzheimer’s himself. Gibbs says that early diagnosis has allowed him to slow the progression of the disease through diet, exercise and other treatment. A documentary based on the book he wrote about his experience, “Tattoo on my Brain,” is airing on June 22 at OHSU. Gibbs and his wife, Lois Seed, join us to talk about living with Alzheimer’s.
Note: This transcript was computer generated and edited by a volunteer.
Dave Miller: This is Think Out Loud on OPB. I’m Dave Miller. The neurologist, Daniel Gibbs, spent his career studying Alzheimer’s and caring for people with the disease. And then at a certain point, he started wondering if he was in the early stages of dementia himself. It turns out he was right. He was diagnosed with Alzheimer’s in 2012. In retrospect, he started to see some early signs of cognitive decline back in 2006. Still, Gibbs says, his early diagnosis has allowed him to slow the progression of the disease through diet, exercise and other treatments. Gibbs and his wife, Lois Seed, are featured in the recent documentary, “Tattoo On My Brain,” which is based on Gibbs’ book of the same name. They both join us now. It’s great to have both of you on the show.
Lois Seed: Thank you.
Daniel Gibbs: Thanks.
Miller: Dan, first. Can you tell us about what you now recognize as your first symptoms?
Gibbs: Yeah, in retrospect, I didn’t realize it at the time at all. But my first symptom was when I started to lose my sense of smell, back in 2006, right?
Seed: Yeah.
Gibbs: I just thought it was a part of getting older, because I was in my early sixties then. Then about a year later, I started to get these strange olfactory hallucinations, which are called phantasms. And they are always the same. They were always the same. They were like the smell of baking bread mixed with perfume and they would last a few minutes and go away. And I thought, “Well
that’s interesting.”
Miller: As a neurologist, did it strike you as something more than interesting? I mean, did you know that was something that could have been worrisome?
Gibbs: Yeah, and as time went on, my sense of smell became totally absent within the next four or five years. And I continued to have the phantasms. And my thought was that, “Well, hmm, I wonder if this is the first stage of Parkinson’s disease?” Because 80% of people with Parkinson’s lose their sense of smell and some of them get phantasm. It’s rare. It’s not a common thing in any disease. But Parkinson’s probably, in the neurologic category, is the most common association with phantasms. So I was thinking that I might be on the road to developing Parkinson’s disease sometime later in life.
Miller: And Lois, at this time, in 2006, 2008, 2010, were you worried about anything you saw in Dan?
Seed: Not at all. No, there were no signs that anything bad was on the horizon.
Miller: Well, Dan, my understanding is that you eventually found out about what was happening inside your brain through genetic testing. You found out you had two copies of – I’m probably going to mispronounce this – a gene known as apolipoprotein E or APOE4?
Gibbs: That’s right.
Miller: What were the implications of that, two copies of this gene?
Gibbs: Well, it is the most common genetic risk factor for Alzheimer’s disease. And in fact, people who have two copies of APOE4 are virtually certain of having Alzheimer’s disease by age 80. About 50% have it by age 70. I shouldn’t say Alzheimer’s disease, I should say Alzheimer’s dementia.
And those are really two different concepts, which we can talk about if you want.
But the dementia is cognitive impairment to the point that it interferes with your daily life. Whereas the Alzheimer’s disease is what comes before that and actually can extend for 20 years before there are any symptoms.
Miller: This is a key point. It seems like at the heart of your big project now, your big public project, is to change the public understanding of how Alzheimer’s can affect a person and the length, and what it means to live with it for a longer period of time. Is that a fair way to put it?
Gibbs: Absolutely. The pathological changes in the brain, the amyloid plaques, and the Tau-containing neurofibrillary tangles start to appear as much as 20 years before the onset of cognitive impairment. That’s not something that was really realized until a decade or so ago. And there’s a bit of a controversy in the field now as to what you call that early stage that has no symptoms. Is it really Alzheimer’s disease? And I would say, “Absolutely, it is.” It’s just not symptomatic.
Miller: And where are you right now in this? Because I have to say, my guess is that I’m not alone in listening to you. I have the benefit of being right in front of you. But everybody who can hear you right now, it wouldn’t surprise me, if the vast majority of people who are hearing you are saying, “Wait a minute, but it doesn’t sound like he has Alzheimer’s. I know people who’ve had dementia. My parents or grandparents had it. And this is not that.” He sounds just like a practicing neurologist right now.
Gibbs: OK. So what was your question?
Miller: Fair enough. And I mean, even that is an example of how with it you are, that you called me on not asking you a question. But my question is what do you mean right now when you say that you have Alzheimer’s disease?
Gibbs: OK. So I actually have Alzheimer’s dementia. I’ve crossed the threshold the last time I had that assessed in terms of my cognitive testing. And also the fact, and this is the most important part of making that distinction, is that it’s interfering with my daily life. Uh, and, OK, help me here Lois.
Seed: What, with your daily life?
Gibbs: Yeah, I mean, the things I’m having problems with.
Seed: Right. Well, I took over managing the checkbook and paying bills. He wasn’t making mistakes but he was getting very frustrated that the numbers weren’t coming out right. And that was one sign. I do all the household management.
Gibbs: Yeah. Yeah. I mean, you’re in my brain.
Miller: And it does seem more complicated than that, right? It seems like, from what I’ve just witnessed, that your brain is working marvelously in a lot of ways and there are times now, and it’s a progressive disease, when it’s not. When maybe you lose your train of thought and that’s where Lois, for example, could just step in?
Gibbs: You know, the first problem I had is typical for Alzheimer’s. Not everybody has this as the first thing, but my verbal memory was affected first. And it is affected the most, at this point, compared to other problems that other people have. But I have terrible trouble with names and it comes and goes. I can walk down the street with my dog and I’ll see a neighbor and I just can’t remember what their name is. So I make kind of a game out of trying to come up with the name before I actually have to talk to them, or I should say, get to talk to them.
I’m not trying to avoid contact with other people. And in fact, I welcome it because I want to get the message out that there’s nothing to be ashamed of. And you need to maybe help out the person with Alzheimer’s a bit by helping them find a word that they can’t find or a name that they can’t find. And I think sometimes that drives Lois crazy. But, you know.
Seed: But David, you’re absolutely right about this doesn’t look like Alzheimer’s to most people because most Alzheimer’s patients aren’t diagnosed in these very early stages. And so the public perception of Alzheimer’s is of an elderly relative or friend who doesn’t recognize their family members, can’t take care of themselves, and that’s way down the road for Alzheimer’s.
Miller: Do you have a sense for how far along you were in the progression of Alzheimer’s when you were diagnosed, compared to the average time when somebody is diagnosed? I’m curious how far ahead you were.
Seed: A lot.
Gibbs: So, let me just say that when I was diagnosed it was actually 2015. I’m not sure where the 2012 came from. But the neurologist who made the diagnosis at UCSF (University of California, San Francisco), Gilbert Benevich, said he had never seen anybody as early in the stage of Alzheimer’s as I’ve had. And because that was based upon CAT scans, I was part of a study. So I had Tau and Amyloid CT scans which the vast majority of people don’t have the ability to take advantage of.
Miller: And part of that was because of your connections as a neurologist?
Gibbs: Absolutely, yes, and because I volunteered for a study. And that’s another thing I try to get out. People who are on the Alzheimer’s trajectory or have a family history should get involved in a study and you can get these things done and you can help out the science. The biggest risk factor for getting Alzheimer’s disease is having a first degree family member with it; father, mother, brother, sister.
If you’re in that category and you’re middle aged, or even any time, you need to think about the possibility that you could also get Alzheimer’s and start doing things that might mitigate the chance of getting it or slow the progression of it.
Miller: Well, let’s turn to that now. Because if, as you’re saying, what was so significant was you had this early diagnosis, that’s only helpful if there are proactive things you can do once you are diagnosed. So let’s go through what you’ve done as a result that you think made a difference for you starting with diet first.
Gibbs: I’m only going to talk about stuff that’s evidence-based. So nothing from other sources.
Miller: I appreciate that.
Gibbs: OK. So with diet, there is very good evidence that a plant-based diet like the Mediterranean diet, if one follows that diet, they are less likely to get all-cause dementia, but particularly Alzheimer’s disease. By all-cause, that’s a fancy word for the other types of dementia, vascular or other kinds of vascular Lewy body dementia, frontal lobal …
Seed: Frontotemporal.
Gibbs: Frontotemporal dementia, right.
Miller: So Mediterranean diet. Less meat, in other words, is helpful.
Gibbs: And I follow, religiously now, a variant of it called “the mind diet” which has a little more nuts and berries. There’s actually very good data for that. People who follow it religiously have about a 35% to maybe even 50% less chance of developing Alzheimer’s later in life.
Miller: What about exercise? And I’m thinking both about physical exercise and mental exercise.
Gibbs: Those are two different things, and there’s really good evidence for physical exercise and aerobic exercise. There’s less evidence for strength training, although it’s not bad. But it doesn’t have the protective effects that aerobic exercise has. And there’s been a lot of, I shouldn’t say controversy, but maybe some disagreement about what’s the right amount of aerobic exercise.
The data is pretty good that 10,000 steps really is the sweet spot. But you still get benefit from as little as 3,000 steps per day. Not everybody gets 10,000. I mean, I have a dog who’s aging, so it’s getting harder to get the 10,000 steps because my dog puts down his paws …
Seed: He’s your walking buddy.
Gibbs: He’s my walking buddy.
Miller: And what about mental exercise? Before we get to the data, I’m curious what kinds of mental exercise you actually enjoy? What gives you joy as you’re trying to give your brain some helpful work?
Gibbs: Well, probably the most effective thing for me has been launching into this project of being a minister for Alzheimer’s, if you will. I’m not saying that quite right. But …
Seed: Alzheimer’s awareness.
Gibbs: Alzheimer’s awareness, right.
Miller: You’ve turned this into a kind of second career. You retired from medicine and then jumped fully into being an evangelist for early diagnosis?
Gibbs: That’s right.
Miller: In a way that doesn’t feel like you’re just too much in this world?
Gibbs: I’m not sure what you mean.
Miller: I guess what I mean is this is your own personal reality. And I’m wondering if you ever feel like this extra side job that you’ve given yourself means that you’re only ever immersed in thinking about Alzheimer’s?
Gibbs: And that’s OK.
Miller: But it doesn’t bother you?
Gibbs: No, and that’s a defense mechanism. I have a defense mechanism that other people don’t have. I was a neurologist and a scientist that had an interest in the workings of the brain. For example, when I saw my first Amyloid CAT scans …
Miller: Of yourself?
Gibbs: Of myself, right. In a group of about 20 people down at UCSF, it showed a modest amount of beta Amyloid. But my eye just shot to two parts of the brain, the piriform cortex and one other. See, I can’t think of the names that are involved with the processing of olfactory information. So there was a correlate to the loss of smell that had happened over the preceding 10 years or so.
Miller: You could see visual evidence for what you’ve been experiencing for a decade?
Gibbs: And I said, “Hey, this is really cool!” and the room exploded with laughter because that’s not the norm. But see, that’s a defense mechanism too because I can step back and look at my disease through the eyes of a neurologist and a scientist and what we can learn from this sort of attitude rather than dwelling about what’s gonna happen to me in 10 years or whatever, when I have end stage Alzheimer’s disease.
Miller: Often, when people use the phrase “defense mechanism,” they use it in a negative way. But it seems like you’re saying this is actually a helpful way for you to be able to focus on something that’s less painful?
Gibbs: Yeah, absolutely. I don’t think there’s anything negative about it except that it makes you feel a little bit guilty because I have that chance that other people don’t.
Seed: The opportunities.
Miller: Lois, you’re not a neurologist, right?
Seed: I am not a neurologist. I’m a librarian.
Miller: OK, so you don’t have that kind of scientific curiosity to fall back on as you navigate this together. What do you have?
Seed: Well, what I have is [that] I’m a very good organizer and I am able to keep our household organized and running, and at the same time, begin simplifying. And I think the goal would be to keep things as normal as possible for as long as possible. In order to do that, we have to constantly adapt.
Miller: It strikes me that you’ve both talked about the huge benefits of the early diagnosis. I do wonder about a potential flip side – that because you found out a lot earlier than a lot of people, that you have Alzheimer’s, I’m wondering if it’s meant that you have been in a state of kind of hypervigilance about your own brain, looking for cognitive decline for a lot longer than most people have to pay attention to their brains like that?
Gibbs: Yeah, that’s probably right. But I don’t know that it’s necessarily a negative thing.
Miller: Is it true that you go through your days and if you forget a word or maybe you’re used to that at this point. But are you always on the lookout for the next symptom or are you always on the lookout for a sign of decline?
Gibbs: Well, no, not really. And in fact …
Miller: You didn’t see and I hope this doesn’t give away a secret. But Lois was mouthing, “Yes,” as you were saying, “No.” The question is, are you always on the lookout for decline? Maybe I can give both of you a chance to respond to this.
Seed: Well, I think he kind of is. I think at times, something will happen and he gets frustrated and indicates that this is just something he can’t do and we need to change our expectation.
Miller: What about you? I guess I’m wondering how you could not always be on the lookout for those signs of decline, but even just in terms of looking out for his safety?
Seed: Yeah, I am and the safety of our household. We have a dog. If the gate’s left open, that could be a disaster. So I do spend a lot of time checking and double checking just everything around the house.
Miller: Dan, you say in the movie that you don’t get screened for cancer anymore. You say, “No more colonoscopies, no more prostate tests.” You say, “That may be my exit card.” Can you explain what you mean by that?
Gibbs: Yeah, I mean there’s no way to put a sugar coating on death by Alzheimer’s dementia. I mean, it’s a really unpleasant way to go, generally speaking. So I think everyone with Alzheimer’s disease, or most people with Alzheimer’s disease, that’s something that they worry about, particularly if they had a family member and they’ve gone through it with their family member … Oh gosh, I’ve lost my train of thought here.
Seed: That end stage.
Miller: It’s not wanting to find out about cancer.
Gibbs: So, yeah, I have a very strong family history of cancer. And so I assume that will get me, I hope that it gets me, before the Alzheimer’s does.
Seed: We might have a different opinion on that. Because I don’t think death by cancer is all that great either.
Miller: What are good days like for both of you right now?
Seed: Oh, good days involve our dog and our grandchildren and our adult children. We have family close by and supportive and we’re all very welcoming to each other. And our kids are helpful when needed. So that’s a good day. A good day is when we are around our family.
Gibbs: Yeah, and a bad day is too many of those people around. [Laughter] I don’t do well when there’s a lot of conversations going on because I can’t sort them out. So even with the family, it’s an issue.
Miller: Dan Gibbs and Lois Seed, it was a pleasure talking with both of you. Thank you.
Seed: Thank you.
Gibbs: Thanks.
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