Where Alzheimer's is scarce

Many claims have been made for turmeric, including its therapeutic prowess to prevent or limit the ravages of Alzheimer’s. Research by the ethnobotanist James Duke suggests that extracts of turmeric include natural agents capable of thwarting the formation of beta-amyloid, a substance that over time hinders cognition and leads to Alzheimer’s.

In his book The End of Memory: A Natural History of Aging and Alzheimer’s, Jay Ingram notes that more than 50 studies link curcumin, turmeric’s active chemical, to lower rates of Alzheimer’s in India than in most other countries. “In the lab, curcumin both discourages amyloid beta from aggregating and begins the process of disassembling already-formed amyloid beta fibrils,” Ingram writes. “Stepping up to the more complex arena of cell culture, curcumin performs well and is versatile, reversing or slowing several different chemical processes that contribute to Alzheimer’s…. [M]ice engineered to be susceptible to Alzheimer’s were put on a relatively low curcumin diet and after six months had fewer plaques and smaller loads of plaque-building material.”

But in a starkly counterintuitive finding, using higher doses of curcumin provided no protection from Alzheimer’s at all. It is well-known, according to Ingram, that lowering the levels of plaque doesn’t always enhance cognition. On the other hand, rats injected with amyloid plaque that were later fed curcumin performed better on water-maze navigation tests. The curcumin evidently counteracted the damage wrought by the amyloid plaque.

This is an encouraging approach, but a good deal of testing awaits curcumin’s efficacy. Ingram’s book, which was published about eighteen months ago, cites a curcumin-related article in Ayu, a journal of Hindu traditional medicine. But the study had an obvious weakness: only three people participated. A clinical trial in Hong Kong, which included thirty-four people, did supply some useful data on such things as absence of side effects. But the placebo group in the study showed no palpable cognitive decline, drawing the conclusion that “it was impossible to conclude anything about the efficacy of curcumin.” Not exactly an encouraging result.

Ingram faults other studies, including one in Singapore with more than 1,000 participants, including Chinese, Indians and Malaysians in the age range of 60 to 93. He notes that while the scientists sought to control for numerous other influences, such as diet, exercising and smoking, the group might have included many undetected factors.

One particularly relevant study compared rates of Alzheimer’s in Ballabgarh, a rural district near Delhi in India, and the Monongahela Valley in western Pennsylvania. (Coincidentally, B. Smith, the former celebrity model, restaurateur and television personality who was diagnosed with early-onset Alzheimer’s in 2014, grew up in this area of Pennsylvania.) The difference in Alzheimer’s rates among the two regions is stark. According to Ingram, the rate in Ballabgarh among people older than 65 is just one percent. In the Monongahela Valley, the number appears to be about six times that rate. Tellingly, in the local language in Ballabgarh, there is no equivalent term for “dementia.”

One possible reason is that, much like in North America in the 1930s, elders in Ballabgarh are likely to live among extended families, and declining memory capabilities, it seems, are regarded as a common feature of getting older. One telling figure is that three-fourths of the people in the study were illiterate. Yet, a crucial feature, according to Ingram, is that far fewer people in Ballabgarh have the APOE4 gene, a marker for Alzheimer’s.

In a rather deflating conclusion, Ingram writes, “Obviously, when it comes to curcumin, the evidence that it actually plays a significant role is pretty scant.” But that’s no reason to stop—or in my case, to start—to consume turmeric on a regular basis. I happen to like Indian food quite a lot, especially the dishes with lentils or other legumes. And I plan to purchase a bottle of the pill version of turmeric soon after I finish writing this piece.

The state that I was in

What was the most challenging aspect of last Saturday’s “Ride to End Alzheimer’s” fundraiser in New Hampshire? For me, it wasn’t getting into shape for the 62-mile ride. It was finding a partner to ride with. At one point I suggested to Paula that if I couldn’t find anyone, I would ride on my own. This, I submit, is an example of someone in an early stage of Alzheimer’s who conveniently forgets that he has any impediment at all. While I can still drive a car with confidence amid familiar surroundings, my disease is eroding my sense of direction, which was was not very good even in the best of times. Fortunately, our friend Matthew Abbate volunteered to join me.

On my own, this could have been a debacle. Portsmouth, where our hotel was, and the town of Rye, where the ride started, are only about six miles from each other. And, yes, I do have a GPS unit, but one that has betrayed me repeatedly. I’d been asked to give a brief pep talk at the pasta dinner on the eve of the ride, and being late for my own speech would not have set a good tone.

Saturday morning in Rye was a cool one, especially during the first few miles, when we were parallel with the ocean. As is common in this weather, it took time to pass through the phase when pedaling feels mildly uncomfortable even when riding on level ground. We were also contending with the ocean side wind. As we turned east toward forested areas, the extensive signage provided by the Alzheimer’s Association became essential. Perhaps 50 yards before the upcoming intersection or fork in the road, a large sign was visible. A second set of signs appeared close to each fork or intersection.

Did I have any sense of where I was, once we started following the signs? There were many turns. Occasionally we would see stretches of Interstate 95 or lesser expressways, and I would grasp that we were heading south, toward Massachusetts. But often my internal compass was twirling around in a dark wood, the kind that Hansel and Gretel got lost in. Matthew’s sense of direction appeared to be impeccable. I did, of course, know what state I was in—the ride passed through the Massachusetts towns of Amesbury and Salisbury. For a brief time, we rode alongside the broad, muddy Merrimac River, and soon we had to stand up on our pedals to propel ourselves out of the river valley.

The course included two mandatory “pit stops,” where riders were supplied with high-energy foods ranging from oranges and bananas to peanut butter and jelly sandwiches. Without these snacks, we would almost certainly have been a good deal stiffer at the end of the day. And I seemed to get stronger as the ride advanced. Unbidden, I started hearing in my head the refrain of the mid-nineties hit by Cake: “He’s going the distance/He’s going for speed.” Nearing the finish line, I broke into a sprint, with Matthew not far behind.

Encouraged by our relative ease in completing the 62 miles in about five hours (not including the two pit stops) I found myself mulling the possibility, next year, of riding the 100-mile course. Mulling is the key word. I havn’t done that distance since I was nineteen. And the 100-mile route isn’t just a matter of riding 38 miles beyond the “metric century” that Matthew and I completed. It is also much hillier, with top elevations aroud 4,000 feet. Still, I occasionally revisit one of my favorite poems, Tennyson’s Ulysses, which describes

a group of Greek heroes well over the hill.

Death closes all: but something ere the end,

Some work of noble note, may yet be done,

Not unbecoming men that strove with Gods.

With that modest conclusion, I am proud to annouce that Matthew and I have raised just twenty dollars shy of $4,000 for Alzheimer’s research. As of this past Tuesday, the event had netted a total of $382,000 overall, a new record. More than 500 riders registered, also a first. And additional donations are welcome throughout the summer.

As I’ve been reflecting on the organizational task of enabling Saturday’s ride, I’ve also been thinking of David Costa, who I worked with for almost a decade at the Massachusetts Municipal Association, the advocacy organization for the state’s cities and towns. David was the MMA’s conference and meeting planner, and he was very good at his job. Each year, the MMA hosts an annual conference and trade show in Boston, typically attracting about 1,000 people. David was masterful at overseeing this gargantuan task. On a staff with several high-strung personalities, myself included, David radiated competence and calm. That he died, in his sleep, at age 51, just days before our annual conference in January 2015, was cruelly untimely. He is among the most capable and unflappable people I have known. I suspect that David would have loved to be involved with an event as well-run as the Ride to End Alzheimer’s.

A distracted killer

Almost exactly one year ago—June 9, 2015—I submitted to a PET scan at Sancta Maria Nursing Facility in the far west end of Cambridge. Because I would be mildly sedated during the procedure, I was advised not to drive, and my cab driver got me to Sancta Maria well ahead of my 6:45 appointment. The Boston area is famous for its medical institutions, but Sancta Maria struck me as down-at-the-heels. The main part of the building featured the dour institutional architecture of the 1950s, and I wondered if, by chance, this building was once a place where lobotomies were performed. I was led to a temporary wing, consisting of what looked like a series of refurbished box-car compartments. I remember crossing over an elevated piece of corrugated metal to get to one compartment of the facility to the next.

It had been some time since I’d had a deeply unpleasant medical experience. A terrible case of intestinal flu landed me in Mount Auburn Hospital one evening in the late nineties. More notable was an incident a decade earlier, when I was about to start graduate school at Northeastern. The university required evidence that I’d been exposed to one of the very common childhood illnesses of my generation—measles, I think it was. I was certain that I’d had the disease, but I couldn’t document it. And since I had no documentation, I was told I would have to receive the shot. I refused, and in my head I pictured my tormentor as Nurse Ratched in One Flew Over the Cuckoo’s Nest. The more I resisted, the tenser I became. By the time I finally acceded, the needle came close to causing me to pass out.

 And now, at Sancta Maria, more than a quarter-century later, something similar was occuring. The orderly, who might have worked as a medic overseas, did not have an empathetic touch. I began to sweat excessively. And as I did, I had a dark epiphany. Until that moment, I’d been able to hold my fears at bay. But my sweating, and the orderly’s rough handling, left my psyche quivering. The PET scan itself I tried not to think about. I recalled the words of our lawyer, who made the point that we would either continue to negotiate with my employer over my severance package, or I would end up with a disability claim.

 At work, none of my superiors raised the question whether the erosion in my performance might have an organic cause. And the psychologist I worked with the previous year agreed with me that burn-out after working in the same job for an entire decade was the likely cause of my problems. I also consulted a psychiatrist, who posited that a B-12 vitamin deficency might be in play.

How did I react to my diagnosis, a few days after the PET scan? It was a gorgeous early-summer day, and as I’d been doing often after work, I got off the subway at Central Square in Cambridge, ensuring that I would have time to walk vigorously for more than 30 minutes. Trudging up one of Somerville’s steepest hills was invigorating. When I reached our back deck, I was pleased to see that Paula had made tabbouli, one of my favorite warm-weather dishes. It didn’t take long, though, to see that the news was bad. Paula was crying.

I put my left hand to my face, as if by doing so I could blot out the news for at least a minute or so. Didn’t work. I don’t recall eating the tabbouli. But I must have. Like Rusty, the much larger of our two cats, it would take more than a life-changing disease to get in the way of my consuming my food.

Was I wracked with grief? I understood that this was a death sentence. But within a few days I also learned that, in the large majority of cases, Alzheimer’s is a highly distracted killer, a killer who seems to have Alzheimer’s himself. Didn’t I already waste that man last year? Crap, I can’t remember. What’s wrong with me? It’s been ten years, and that guy’s still around? What a piece of shit I am! Merde! Merde! Merde!

Alzheimer's in the news, everywhere

This past Monday I did a news search for “Alzheimer’s disease,” and in two-thirds of a second my search turned up approximately 581,000 results. And this was on Memorial Day, presumably a slow news day. The lead item, which appeared on Forbes’ website, came with an ungainly headline: “New Research Uncovers a Possible Cause of Alzheimer’s Disease That Is Both Surprising and Promising.” (In an earlier era, when space was limited, and editors were paid reasonably well to write sharp headlines, the title might have been “Research suggests possible cause of Alzheimer’s.”)

But what about the other 581,000 search results? Are we being buried under information that makes it harder for researchers and investors to gauge potential winners? In mid-May, the Boston Globe reported on the opening of a 43,000-square-foot “Foundational Neuroscience Center” in the heart of Cambridge’s biotechnology district. “There’s a group of people who don’t know about the Foundational Neuroscience Center, but they will,” Eric Karran, a founder of the neuroscience center told the Globe, sounding a bit like Donald Trump. “And we’re going to cure that terrible disease…. We will find drugs for Alzheimer’s disease and, when we do, that will be truly transformative,” Karran declared.

Charlie Baker, Massachusetts’ popular governor, highlighted his mother’s hereditary dementia during his 2014 campaign. “My mom knew this was coming all her life and she faced this head on,” a brother of the governor told the Globe. “There was no denial. There were times, certainly, when she was frustrated and angry, but who wouldn’t be?”

The New York Times in early May provided exhaustive coverage of the disease, which an estimated 5.4 million Americans have been diagnosed with. The early-onset version, which accounts for roughly 200,000 instances of the disease, can strike as early as the late forties. I experienced initial symptoms at 51.

Yet being relatively youthful has its benefits: My cohorts tend to be in overall good health, and daily vigorous exercise of at least 30 minutes is said to be the best means of slowing the disease’s advance.

The front end of the Baby Boom generation (defined as people born from 1946 to 1964) is swelling the legions who now have Alzheimer’s, a significant majority of them women. While many people can manage reasonably well in the early stages of the disease, all signs point toward a burdensome, if not ghastly, future—and not necessarily only for spouses. A remark that I heard at a conference last month has stayed with me. One young woman who was caring for a parent mentioned that the duty was a heavy burden on the daughter’s finances. The last thing I would want to leave my family with is a legacy of debt.