Friday, February 24, 2017

Five guys discussing Alzheimer's

This month’s edition of Men’s Health, the glossy magazine that typically depicts muscular, if not downright freakish, male models on its cover, included five short profiles of middle-age guys who have been diagnosed with Alzheimer’s or a very similar disease. One is Mike Belleville, whom I’ve known for the better part of two years through the Alzheimer’s Association, and now serves as an advisor to the national Alzheimer’s board on the early-onset version of the disease. Another is Greg O’Brien, a resident of Cape Cod who wrote the indispensable account of his disease in the book On Pluto: Inside the Mind of Alzheimer’s.
In the interview with Men’s Health, O’Brien described Alzheimer’s as a frequent “fog creeping up on the horizon, where you feel it on the back of your neck and it rises and envelopes your head. The brain just feels numb.” One of the things that makes On Pluto such an illuminating read is that, at a time when his mother was becoming seriously demented, O’Brien himself suffered a head injury in a bike accident that seems to have accelerated his own case of the disease. “Doctors said these [head injuries] unmasked a disease,” O’Brien told Men’s Health. “They won’t cause dementia, but if you’re predisposed to it, it can bring it on.” The magazine article also noted that O’Brien has regular hallucinations, including visions of his mother, who died in 2008.
Several of the men had to leave a job or a craft they loved or enjoyed. Anthony Ayers, a well-known furniture designer, was diagnosed at 56. Initially, Ayers suspected that he’d had a stroke. As the author of the magazine article, Cindy Kuzma, explained, “One day his right leg just wouldn’t move the way he wanted it to move.” But doctors found no evidence of a stroke. In the next few years, Ayers had symptoms that were “annoying,” not debilitating. But during a trip to Italy, he had trouble understanding the historical documents he was reading. And his wife began to notice that he was forgetting things. His doctor thought he had an attention-deficit disorder, but the medication just made things worse.
 There was no obvious culprit in his family tree that might have carried the APOE4 gene, which makes certain individuals more likely to develop the disease. “Once an avid reader and writer, he now struggles to print his own name,” Kuzma noted. These days he has trouble using a tape measure, “so the woodworking he once loved has become nearly impossible.” The cabinet he is working on is likely his last, according to Kuzma. If there is any sign of a silver lining, it resides in his ability to paint, at least for now.
Like most people when they detect the first symptoms of Alzheimer’s, Brian Kursonis, a financial analyst, was not ready to grasp the symptoms’ significance. “I think I hid my Alzheimer’s from me,” Kursonis said. “I wasn’t relying on my brain, I was relying on calendars and reminders.” By early 2015, according to Kuzma, Kursonis was developing symptoms “no time management system could mask.” At least once a day, he would “blank out.” Not surprisingly, his production at work slackened. His wife would sometimes find her husband’s morning coffee still in the microwave hours later.
Perhaps the most poignant story belongs to Michael Ellenbogan, who experienced symptoms of dementia when he was only 39—exceedingly early for Alzheimer’s. “He’d pick up the phone to dial a four-digit extension and stop because he couldn’t remember it,” according to Kuzma. In the middle of conversations with his employees, he would forget their names. “To see myself deteriorate like this to the point I now need so much help in so many ways…it’s so frustrating.” But Ellenbogan has gone on to become an inspirational speaker, often before large crowds.
Belleville, my cohort at the Alzheimer’s Association, at first “laughed off” his minor memory lapses as signs of stress—my experience exactly. “Eventually,” Kuzma commented, “Belleville’s struggles became more noticeable.” The telecom technician had to ask his co-workers how to do his own job. A turning point in his family life came when his wife had to fill him in on the “terrible argument” they had the previous night. Mike had no recollection of it. Such are the insidious ways of Alzheimer’s.
To read the Men’s Health article, do a search for “These 5 guys were diagnosed with Alzheimer’s before 6o.”

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