NEW YORK CITY
Winter–Spring 2013
B. was too young for Alzheimer’s. That’s what we thought. Yes, she had grown forgetful. Yes, we had to get her checked out. But whatever was happening, surely it had to relate to a strange physical symptom B. had been feeling for some time. Or so we thought.
B. described it as a sharp, even painful tingling on the left side of her face. It came and went, at first not strongly. Tylenol seemed to help. Perhaps B. had some slightly pinched nerve that would cure itself. Perhaps the problem was stress. Then came the Today appearance. Okay, we decided: maybe B. had suffered some kind of mini-stroke. That would account for the tingling on one side of her face, but not the other. Memory loss? That was just a side effect. The stroke’s effects would wear off soon enough, and B.’s memory would return.
Looking back, I see what we were doing. Bargaining with fate. A mini-stroke? We could deal with that. Anything but Alzheimer’s.
Despite that scary moment on the Today show, I felt hopeful that B. and I could love, work, and live together for years to come. Whatever her problem was, we’d just solve it and move beyond it.
With that outlook, I landed us a show on SiriusXM satellite radio in early 2013. It was just the two of us interviewing guests for three hours a day, five days a week, about this and that, everything from cooking to politics to the weather. In our first weeks, we got everyone we asked, including Michelle Obama! We had singer Michael Bolton, actor Terrence Howard, former basketball great and ex–New Jersey senator Bill Bradley, and many more. The producers had lists of questions worked up for both of us to ask the guests. When it was B.’s turn, she’d ask the question, and the guest would respond, but then…silence. Radio silence. B. just couldn’t follow up. I’m a talker, as anyone who knows me will attest. I love to hold forth over a drink as much as the next man, maybe more than most. But even I couldn’t handle three hours of interviewing guests while trying to keep B. on track and focusing all my efforts on not having it look like she’d lost the thread. We had a deal with Sirius to earn us six-figure salaries, plus incentives and benchmarks that could bring the pay close to $1 million a year. But without B. there to carry her load, we had to let it go, just weeks after we’d started. It wasn’t the only opportunity we’d have to give up. Alzheimer’s, as we were learning, changes every expectation you have, and leaves most of them in pieces around you.
Through a friend, we found our way in the spring of 2013 to NYU Langone Medical Center, where a doctor interviewed B. and concluded that she might be depressed. He prescribed a medical patch, like what a smoker would wear to try to kick the habit, only this one went on B.’s back. The patches felt uncomfortable, left marks, and just made her feel worse.
Next stop was Mount Sinai Hospital. Dr. Jane Martin, an assistant professor of psychiatry at the Mount Sinai School of Medicine, put B. through hours of memory tests. First she asked B. to remember a series of three words, like “red apple ball.” Then she asked B. questions like “What’s your favorite color?” “What kind of car do you drive?” “What’s your birth date?” B. got those just fine, one after another. “Now what was that series of three things I asked you to remember?” the doctor said gently.
B. had no idea.
Her favorite color, her kind of car—those answers were rooted in her long-term memory. The three-word series was short-term memory. B.’s short-term memory was shot.
I could rationalize that easily enough. What sixty-four-year-old could remember a six-word series? Or phone numbers—who can remember ten-digit numbers without a serious effort? But then Dr. Martin put a blank piece of paper in front of B. and asked her to draw the hands of a clock showing 10:45. She couldn’t.
That was a shock to me. You don’t think of asking your significant other to prove she still knows how to tell time. Still, how had I missed this for so long—months, maybe even a year? Maybe it was partly because B. had a digital watch, and could still read numbers just fine. But also, perhaps, because I had been so self-absorbed and controlling of our work and days that I read the clocks and led the way, and B. just followed along.
Also at Mount Sinai, B. underwent a series of tests for the facial tingling. Doctors put wired electrodes all over her face. I snapped a picture and emailed it to Dana, which probably wasn’t a smart idea. It freaked her completely.
The tests, including an MRI, eliminated several possibilities—including stroke. It failed to determine what the tingling was about. Long after the diagnosis, we would still be wondering. Did it trigger the Alzheimer’s? Occur as a result? Or was the tingling a totally unrelated issue? To this day our doctors still don’t know.
The results of Dr. Martin’s cognitive tests left no doubt about our next step. Until recently, the Alzheimer’s team at Mount Sinai would have based their diagnosis on these simple cognitive tests, and what we told them: the growing list of small memory lapses, one story after another. For decades that was how doctors had been diagnosing Alzheimer’s. That—and one other pretty gruesome test. With a very long and terrifying needle, they would extract a bit of spinal fluid and measure its level of a sticky white protein called amyloid. The less amyloid in the spinal cord, the more there might be in the brain. They knew that amyloid in the brain forms plaques, and that the plaques are associated with dying brain cells—though why amyloid forms those plaques in the first place is the $64,000 question. But amyloid in spinal fluid is still an indirect test, like looking at one of those old fluid-filled glass beakers in your country house kitchen to predict a coming storm.
Now the doctors had a brand-new method to map those plaques in the brain and reach a true, unmistakable diagnosis. They added a radioactive isotope intravenously to B.’s blood that coursed brain-ward through her arteries. For twenty-four hours, we were warned, B. had to stay away from babies and infants—that’s how radioactive she was. She couldn’t fly: she’d set off the security machines. A Geiger counter set up against her would go berserk. That night she asked me if I wanted to sleep in the spare bedroom. No way, I said. I curled around her as I did every night. Whatever that radioactivity did to B., it could do to me, too.