Early in my career, when I chose to step away from research and devote my career to clinical neurology, one of the most compelling reasons was how much I loved working directly with patients, able to bring cutting-edge medical approaches to them and see the difference these made in their lives. When I was in medical school, somebody once told me that his father had been a neurologist but had left to go into research because patients were disheartening – there was so little to be done for so many. That was true up to about the 1980s. But by the time I went into practice, that had changed. It was an especially exciting time to be a neurologist because advances in research were producing medications that could dramatically improve a number of these conditions. The advances in medical treatment of migraine and MS had been life-changing for so many of my patients. Unfortunately, dementia was not one of those scientific success stories – at least, not then.

Dead reckoning, one of the oldest and most basic methods of navigation, was for centuries an essential piece of the mariner’s skill set, and it was still required to captain a charter sailing boat in the late 1990s, when the idea of a late summer week on the water off the San Juan Islands first captured my imagination. The islands, hundreds of them, some inhabited and others no bigger than a pickup truck, form an archipelago off the northernmost coast of Washington and British Columbia. On the water, you share the Salish Sea living room with the likes of baleen whales and orcas, sea lions and otters. The sky is just as lively by day, with the sea birds monitoring the waters for their next meal, and at night – the silent, spectacular sea of twinkling stars.

I learned to sail when I was a kid, growing up near the water in Southern California, where skiffs were common. My great-uncle Fred taught me the ropes, but not the dead reckoning system using compass, landmarks, and coordinates of time and speed to chart your course.

Lois had retired professionally from her career as a librarian when we moved to Portland, but her tenacious appetite for digging and discovery found fertile soil in family life. She became an ardent genealogist – she loves puzzles and loves that genealogy is all about solving puzzles and mysteries. She is as happy digging online as she is digging in the garden – which is to say, very happy. This always led to interesting choices for our rare downtime, and I was a grateful beneficiary of her book and TV viewing recommendations. In 2012, we had become fans of the PBS series Finding Your Roots with Henry Louis Gates, Jr., a show that used a combination of traditional genealogical research and DNA testing to trace the family histories of famous people. Around this time, she had been stumped in her efforts to clarify some of the obscure branches of our respective family trees.

In my neurology practice, when patients had scans or other tests done, we always made an appointment to go over the results together within a few days or a week. The point was that it was something you did together: we looked at the images together, discussed what we saw, talked through their questions, concerns, fears, and talked about next steps. That’s the way it’s supposed to work.

Since I could access the digital files of my scans myself as a physician, I thought I’d just take a quick look to confirm that this was a non-issue. Save my doctor and myself the trouble of a follow-up appointment. As I pulled up the scan, I wasn’t expecting to see anything, so I was startled to see a significant something. I leaned closer and stared at the image on the screen. There was a really big tumor there, a surprisingly large tumor – a mass the size of a ping-pong ball.

I never imagined that my weekly ritual of sorting pills by the bathroom sink would someday draw an audience. Much less a documentary filmmaker and crew with cameras, lights, and sound equipment perched on the counter for the best angle. It wasn’t what I expected in this lifetime, but then I could say the same about writing this book.

When I penned the brief personal essay that appeared in JAMA Neurology in the winter of 2019, it was to share, as a retired neurologist writing to other neurologists, my experiences as a patient with Alzheimer’s disease. I wanted to encourage them to seek more actively to detect and manage Alzheimer’s in its earliest stages, when a patient’s lifestyle choices have the greatest chance to alter the neurodegenerative course of the disease – a chance to extend the pre-symptomatic stage and slow the progression of cognitive impairment.

I doubt I’m the only father of the bride who has written a toast for the rehearsal dinner, then worried about whether I’d be able to memorize it, tried, worried still and then written it out to have in my pocket just as backup. Not the only one who nervously patted his pocket to be sure it was there, then patted that pocket a few more times to double-check. Jokes about “senior moments” are a constant through-line among people my age. Who can honestly say they haven’t blanked on a name, lost a list, forgotten where they put the car keys or, for that matter, forgotten why they interrupted what they were doing in one room to go to another, and remembered why only long after they gave up?

My new hypervigilance about my own “moments” might have seemed excessive at times. But, having just retired from a long career in brain science, suddenly I had unlimited time and access to study my own, and I was intrigued as well as motivated.

It’s not as if I don’t know what’s in store at the far end of Alzheimer’s. For nearly thirty years, most of the Alzheimer’s patients I saw in my practice were already in moderate to advanced stages of the disease when their doctors referred them to me.

One patient – I’ll call her M. – enters my thoughts now as vividly as the moment she arrived for her appointment. M. was in her eighties, a little unsteady on her feet, so I walked her into my office. Her daughter, with whom she lived, followed closely behind. The daughter had brought her mother to see me because M. had been getting increasingly forgetful, repeating herself all the time. She had been living by herself until recently, but her daughter realized that M. couldn’t safely live independently anymore. Her primary care doctor had already ordered a brain MRI scan that showed brain atrophy but no strokes or tumors.

I had given no thought to retirement previously – I loved my work. The formality of early retirement upended any vision I might have conjured up of retiring at a ripe old age. Yet the abundance of caution that prompted me to retire from formal duties changed surprisingly little about the opportunities for me to contribute as a medical volunteer, where I could support on-site clinicians and patients, and consult with colleagues, locally and internationally. Nothing had substantially changed about my ability to teach – or to learn, for that matter – and in the year after I retired, I maintained a full slate of teaching and volunteer services. Little things came up from time to time, the occasional blanks recalling names and such. But I was able to continue my teaching trips to Tanzania, and to Ethiopia and the Congo. In Portland, I volunteered in a local free clinic providing primary care to visiting immigrants and uninsured Americans. In this setting, I had an experienced family doctor or internist available to supervise and inform my care of patients.

I was up by 5:30 a.m., to give myself plenty of time for an unhurried arrival at the 7:30 a.m. breakfast meeting scheduled at a downtown Portland restaurant. I had been there several times before, most recently about three months earlier. As I got ready to leave the house, already a little behind schedule, I discovered that my cell phone had not charged overnight and was now completely dead. I plugged it in to charge and left the house.

The streetcar took me to the Portland State University stop, and I had a pretty good mental image of where the restaurant was, although I couldn’t exactly remember whether it was on S.W. Fourth or Sixth Street. I looked on Sixth for a few blocks. Nothing looked familiar. I walked over to Fourth Street. It looked even less familiar. I was now late for my appointment. I had no phone to call and say I was late. I couldn’t even check the address of the restaurant.

This chapter describes, and transcribes in full, a Reminiscence event in which ten original members of the audience of the 1979 lecture were invited to talk about their impressions of the meeting forty years before. They describe the atmosphere and reflect on how things were considered then and now. Notes explaining other relevant work and biographies of individuals mentioned are appended.

It was a summer day in 2006 when I first noticed that there might be a problem with my ability to smell. Lois and I were walking the dog when we passed some beautiful roses. I leaned over to smell them, but there was hardly any smell. I said to Lois that as beautiful as these roses were, they didn’t seem to have much of a scent. Some varieties of roses are like that. Then Lois stepped over, took a sniff and had no trouble getting the usual olfactory treat. The problem wasn’t the roses. I didn’t think much about it until a year later when I suddenly began experiencing intrusive smells that didn’t seem to have any origin in the real world. The smell was always the same: like a mixture of baking bread and perfume. It would occur seemingly out of nowhere and last from a few minutes up to an hour.

These false odors are called phantosmias – a kind of olfactory hallucination. In the medical literature, phantosmias are usually associated with decreased ability to smell. It’s as though the brain is inventing a smell to replace the one it can no longer detect.