NEW YORK CITY
Winter–Spring 2013
The next day, B. went in for what’s known as a PET neuroimaging scan. (PET stands for positron emission tomography.) If she had any amyloid plaques, they would show up as clumps of radioactivity. PET imaging for other parts of the body had been around a decade or more, but PET pictures of the brain were brand-new. For neurologists, it was like flicking on a light in a dark room. For the first time, they could see amyloid plaques in a living patient. Until then, the only way to see them was—grim thought—by autopsy.
A day or two later, we went together to see Dr. Martin Goldstein, one of Mount Sinai’s dream team of brain doctors. Given his reputation, I expected a large corner office. Instead we found him in a small, dimly lit room crammed with books—a room so small that the four or five chairs sitting there for guests were jammed together. There was so little space between our seats and Dr. Goldstein’s desk that my knees bumped up against it.
Dr. Goldstein was in his early forties, though he had the gentle bedside manner of an old-style family doctor. We needed all the comfort he could give. He had studied the PET images of B.’s brain, he said: B. had Alzheimer’s. There was no question about it. To us both, it felt like a death sentence. I hadn’t known anyone who had Alzheimer’s, not personally. My first thought was of President Reagan, so diminished by the end that he couldn’t recognize his wife, or remember how he’d served the country. That was a terrifying image.
“Let me show you,” Dr. Goldstein said. He turned his computer screen to us so that we could see the brain image on it. There, in soft grays, was B.’s brain. Right in the middle were four or five white irregular shapes, like blobs of Wite-Out. These, Dr. Goldstein explained, were B.’s amyloid plaques. He had his own metaphor for them. “Think of them as potholes in this complex network of roads,” he said. “The roads are neurons, going to all parts of the brain. If the roads are clear, the signals on those neurons whiz along to where they’re supposed to go. The plaques, unfortunately, are like potholes the signals hit. The potholes throw the signals out of alignment, or maybe off the road altogether.”
Medical science, Goldstein added, cannot yet predict what each pothole impact will do to the brain’s various functions: speech, short-term memory, executive function, all the different cognitive areas. Nor can it break up the plaques, or keep them from forming. So far, he explained, there’s no cure, no reversing the progress of the disease, and no preventive treatment.
Oh, he added—and everybody dies.
“That’s the bad news,” Dr. Goldstein said.
I stared at him, more angry than shocked. Like…there was good news? After that?
“Barbara is at the mildest stage of Alzheimer’s,” Dr. Goldstein went on. “She has a couple of really good things going for her.”
First, B. was still able to function at a relatively high level. She could bathe and dress herself, get around the city, shop for groceries, even cook family dinners. And despite her lapses, there was much she still recalled: long-term memories especially, of her youth, career, and family.
Here was more good news, Dr. Goldstein told us. B. understood she had Alzheimer’s. Many people don’t. They’re not in denial; they just don’t think they’re sick. As a result, they resist taking drugs that might at least alleviate their symptoms. They don’t change their diets or do regular exercise. Worst of all, they can’t talk about their illness with their loved ones. Often they get angry, not knowing that their anger, too, is part of the disease.
That day, Dr. Goldstein laid out what the daily intake of pills would be. There are, he explained, two kinds of drugs to date developed for Alzheimer’s. One works to slow the breakdown of a chemical in the brain related to memory and learning. That chemical is called acetylcholine, so the drugs that try to protect it are called acetylcholinesterase inhibitors (or AChEIs for short). Of the three in that class that are on the market, the one Dr. Goldstein prescribed for B. was Aricept. The other kind of drug focuses on another brain chemical, glutamate, also important for memory and learning. There’s only one drug of that kind, so that was the one B. got. It’s called Namenda.
We shouldn’t get our hopes up, Dr. Goldstein told us. At best, these drugs might diminish B.’s symptoms a little: her memory loss, her language issues, her cognitive decline. Not much, though, and not for long. When we got home, I looked them up. Here’s what Namenda’s manufacturer says on its website: “There is no evidence that Namenda or an AChEI prevents or slows the underlying disease process in patients with Alzheimer’s disease.”
Great!
No one had to tell us that Alzheimer’s often brings on depression: B.’s moods were all too familiar by now, just identified, rather than mysterious. For that Dr. Goldstein prescribed Wellbutrin, a powerful antidepressant that might improve her moods—but also might lead to seizures. (To counteract that danger, Dr. Goldstein prescribed an antiseizure drug called Topamax.) For general health, Dr. Goldstein added the multivitamin Coenzyme Q10 (CoQ10) and B vitamins. Plus aspirin for stroke prevention.
Nowhere on that list was an anti-Alzheimer’s drug. No “take this and keep it from getting worse.” The doctors didn’t have a drug like that—not yet. Nor did they have a cure, or a vaccine to prevent it altogether. The word Dr. Goldstein kept using was managed. Experts in the field are hopeful that Alzheimer’s may become a managed disease, so that a combination of drugs, vitamins, diet, and exercise may keep a mild-stage patient’s condition from progressing.
Sticking to a Mediterranean diet and getting regular exercise were just as important as the drugs, we were told, to keeping Alzheimer’s at bay. With any luck, they would help keep B. stable—long enough for the breakthrough drug to come along.
Mount Sinai Hospital is on upper Fifth Avenue, north of the fancy buildings but still overlooking the upper part of Central Park. When we left Dr. Goldstein’s office, we walked down the park side of the avenue awhile, not saying much. B. held my arm with two hands, as if a storm might sweep her away. I felt awful for her, and overwhelmed, the word Alzheimer’s just flashing in my mind like a big red neon sign.
But to my surprise, I also felt a wave of relief. Knowing was better than not knowing. A diagnosis let us focus. Now, at least, we could do whatever there was to do. Dr. Goldstein had mentioned new drug trials; we could enroll B. in those. A new diet—hell, yes. If anyone could embrace a new diet, it was B. Food was what she did. As for exercise, that was easy. B. had always been relatively fit. We’d get really fit now.
Maybe I was selfish to think this, but part of my relief was in knowing that all those angry moments we’d had over the last two years weren’t signs our marriage was falling apart. That wasn’t B. talking, all those times.
It was the disease.