Friday, November 18, 2016

The outlier

I met Jay Willis in a support group for people in the early stage of early-onset Alzheimer’s disease. I had already learned that this disease typically moves slowly, so it was no surprise that most of my cohorts remained articulate. But Jay, a former lawyer, is particularly well-spoken. Recently, he left our support group, but not because his condition was going downhill. Jay concluded that he had stopped getting worse. Most remarkably, I learned that he was diagnosed with the disease roughly fourteen years. The Alzheimer’s Association website notes that it is possible to live for up to twenty years after being diagnosed, but the assumption is that the person would be just a shadow of his or her former self. Jay, in contrast, no longer shows any symptoms of the disease at all. Is Jay a statistical freak? He says that the people at Brigham and Women’s Hospital, where he has taken part in many clinical trials over the years, nicknamed him “The Anomaly.”
Back in 1999, Jay was diagnosed with clinical depression. He recalled, “I didn’t know what was going on. Just that every day I was waking up and thinking, ‘Well, maybe I’ll die today and I won’t have to deal with this.’” Depression, he discovered, can be an early sign of Alzheimer’s. In 2002, he was diagnosed with mild cognitive impairment, often a precursor to Alzheimer’s. Jay was devastated. He had a prosperous law practice and what he described as a photographic memory. But then he began forgetting things. Alzheimer’s runs on both sides of his family, so he knew that he was at risk. Over the next four years, his weight ballooned from a trim 190 pounds on his six-foot-two frame to 245.
“My brothers and sisters thought I was faking, and I was also regressing,” Jay recalled. “I didn’t know what was going on, either. Just that every day I was waking up and thinking, ‘Well, maybe I’ll die today and I won’t have to deal with this.’” Jay’s doctor advised him to close down his law practice, and when Jay asked how soon, the answer was, “immediately.” It took a year and a half to wind things down.
Over the years, Jay has aggressively sought out participation in clinical trials, in the hope that he could reap the benefits of the drug candidates before they received FDA approval. His earliest clinical trials came soon after his diagnosis. At that time, some researchers thought that the first symptoms of Alzheimer’s could be detected through the hippocampus, the seat of short-term memory, which in cases of Alzheimer’s is typically the first part of the brain to experience decline.
One of Jay’s earliest clinical trials was under the direction of the Alzheimer’s researcher Dr. Dennis Selkoe at Brigham and Women’s. In Jay’s view, if he had to walk the path of the disease, someone else should learn something from it. About five years ago, Jay qualified for a modest drug trial with roughly 200 participants. By then, he was much more social, his depression long behind him. Dr. Selkoe didn’t think Jay would score low enough to qualify for the trial, but in fact he did. “I continued to function, in spite of this chemical imbalance in my brain,” Jay said. “Over the next two years, I kept feeling better and better.” At the end of the five years, they terminated the study.
Are there lessons to be drawn from Jay’s long experience with Alzheimer’s? As one doctor of his said, “You should be mildly demented but you’re not.” Jay’s experience is highly atypical, of course, if not downright freakish. But one practice of his—intense aerobic exercise on a daily or near-daily basis—is something that can benefit many of us who have the disease, in the service of forestalling our way to our murky destination, a depot where no one wants to arrive.

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