A Neurologist Faces His Alzheimer’s Disease

More than 6 million Americans have Alzheimer’s disease. One of them is Daniel Gibbs, MD.

“I’m fascinated by this disease that, for my entire career as a scientist and a neurologist, I could only observe from the outside,” Gibbs writes in his new book, A Tattoo on my Brain: A Neurologist’s Personal Battle against Alzheimer’s Disease. “Now I’ve got a front-row seat — or rather, I’m in the ring with the tiger.”

Gibbs, who practiced at the Oregon Health & Science University in Portland before retiring, stumbled upon his diagnosis accidentally. Little clues, like an altered sense of smell or forgetting a colleague’s name, had emerged over several years.

But it wasn’t until he and his wife tested their DNA to learn about their ancestry that he knew he carried two copies of the APOE4 allele, the most common genetic risk factor for Alzheimer’s disease.

Both his parents had died early from cancer, and Gibbs might never have known about his Alzheimer’s disease until much later in his life, when cognitive symptoms would emerge.

Because he had an early diagnosis, Gibbs has volunteered to participate in several Alzheimer’s clinical trials in recent years, including one for aducanumab, the controversial Alzheimer’s treatment the FDA is expected to decide upon in June.

During the open-label extension of a phase III aducanumab trial, he developed a serious amyloid-related imaging abnormality (ARIA) involving both brain edema and intracerebral hemorrhage, which he recovered from. He went on to co-author a case report about the clinical course and treatment of his complication.

MedPage Today spoke with Gibbs to learn more about his experiences and perspectives since his Alzheimer’s diagnosis.

What’s it like to have a disease you know so well?

Gibbs: It’s a huge advantage to me to be able to look at the disease through my two masks, as a patient and as a neurologist. Looking at it from the neurologist scientist’s point of view is a lot less threatening and is intellectually very satisfying. I enjoy reading and writing about it. It’s a coping mechanism, but it’s not something I can recommend to anybody because while I’m sure there are some neurologists with Alzheimer’s disease, it’s a very small subset of people.

What do you think about, when you think about the future?

Gibbs: I have a pretty good idea of what the future holds. Everybody with Alzheimer’s has thoughts about the future.

One of the messages I try to get across in the book is that you need to plan for the future while you are still cognitively intact, and make very clearly known what you want done when you’re unable to give instructions about your care. I’ve done that. My family knows, my doctor knows: I don’t want anything done if I can’t participate in making decisions.

That’s a very personal thing. I’ve talked with someone who has a very different take on it, who had an older member of the family who ultimately died of Alzheimer’s disease who wanted everything done, and the family was all in. But that was a personal choice. That’s not my choice.

Why did you join the aducanumab trial?

Gibbs: I volunteered for the aducanumab study and was so excited about it, in part, because of the very clever way it was discovered. There was an antibody isolated from aged, cognitively normal people that was reverse-engineered into aducanumab; the theory was that this unique antibody was somehow protecting these people from getting Alzheimer’s disease.

But another reason was that all other trials of monoclonal antibodies for amyloid were dosed to try to avoid or minimize ARIA. The aducanumab trial was, from the get-go, more aggressive. I think probably some of the good results came from the people who had ARIA.

Tell us about your ARIA and the “tattoo” it left on your brain.

Gibbs: For me, a “tattoo on my brain” has two forms. In the ARIA — the amyloid-related imaging abnormality complication I had from aducanumab — there was both leakage of fluid causing swelling in my brain and leakage of blood, microhemorrhages. Those went away, as did the swelling in my brain, but they left behind this hemosiderin, this iron-containing pigment which is not dissimilar to tattoo ink, if you will.

I haven’t had a recent MRI scan, but at least the last one I looked at a year or two ago still showed those little dots of hemosiderin. In a literal sense, that is the tattoo on my brain.

But in the figurative sense, the tattoo is a symbol of a kind of coming out of the closet and showing something that you’re not ashamed of. And that’s one of my chief goals now, to try to do everything I can to lessen the stigma associated with Alzheimer’s disease and get people to talk about it openly, so we can think about it as a continuum from very early disease to late disease, which is the only part of it we were thinking of up until now.

That’s the image that everybody has of Alzheimer’s disease: the poor soul in the nursing home who is unable to communicate and is totally dependent on others for care. But the disease starts decades before that, probably two decades before there are any cognitive signs or symptoms.

What is your book about?

Gibbs: The book is really about people with early disease and the children of people with Alzheimer’s disease because they’re at risk. The biggest risk factor for getting Alzheimer’s disease is having a first-degree relative with Alzheimer’s. It means you are more likely than not to have a genetic susceptibility to Alzheimer’s, particularly if there’s more than one member of the family.

We need to loosen up the conversation so people start thinking about it early, because that’s ultimately when I think management is going to be effective, whether it’s adopting the lifestyle changes that will reduce risk like aerobic exercise and diet, or ultimately, drugs.

Where do you think we’re heading with Alzheimer’s treatments?

Gibbs:I suspect that our first disease-modifying drugs will be effective in those stages before there’s any kind of cognitive loss at all. Those are going to be really hard studies to do.

Some of them are already underway, but recruiting patients who don’t have cognitive impairment but who have the pathology of Alzheimer’s disease is exceedingly difficult. Those people are going to come from families with Alzheimer’s disease, for the most part.

What would you recommend to somebody in their 40s or 50s who had a relative with Alzheimer’s disease? Would you recommend they get tested?

Gibbs: That depends. If that person is interested in being part of a study, then yes, for sure. I would not necessarily recommend it if there’s not a reason to think you might have a family history of Alzheimer’s.

But what I would recommend is for everybody to start doing things that are good for them. A heart-healthy diet is good for you in so many ways. It’s hard to say that’s not a good idea, although we’re a country of hamburger-loving people. And exercise — I don’t know how you overcome that bar of convincing people if you want to be a healthy 70- or 80-year-old, you have to exercise and get a good diet. And good sleep.