Geri and Jim Taylor didn’t set out to become famous.
But after Geri’s early-stage Alzheimer’s diagnosis in November 2012, they wanted to destigmatize the disease.
So they made a decision that has reverberated worldwide: They invited New York Times reporter N.R. Kleinfield to chronicle the early years of their Alzheimer’s journey.
Kleinfeld’s 20,000-word feature – which published on May 1 – provided a stunningly poignant and illuminating look at what happens when “mild cognitive impairment” inexorably degenerates into the various initial stages of Alzheimer’s – when the person is still functional and independent, but starting to experience significant changes.
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Geri described the gradual onset as “like purgatory … kind of a grace period.”
The digital version of the story has become one of the Times website’s most-viewed articles ever – so popular, in fact, that the Times set up a special letters section dedicated to letting readers share their own Alzheimer’s experiences.
That Geri so eloquently articulates what’s happening inside her head – at one point describing her mind being “like a stalled engine that wouldn’t turn over” – is just part of what makes the piece so powerful. She had long suspected this would be her fate because Alzheimer’s runs in her family: Her father, an aunt and a cousin all suffered from it.
The relationship between Geri and Jim – she’s a retired former nurse and health care company executive; he’s a retired IBM financial analyst – is as inspiring as it is heartwarming. In the face of her inevitable decline, the couple has remained remarkably upbeat, cherishing every moment together.
“I know this sounds really strange, but I don’t think Geri and I have had a better period in our marriage than right now,” Jim told the Times. “We’re much more dedicated to be with each other. The disease has brought that.”
And while the Taylors have no illusions about what will eventually happen to Geri, they’ve also become passionate advocates for the Alzheimer’s community and the Biogen clinical drug trial she’s been participating in for the past year.
The septuagenarian couple (he’s 70; she’s 73), who own a house in Sherman, Connecticut, and a one-bedroom apartment in Manhattan, have a South Florida connection: Geri’s sister lives in Palm Beach Gardens, and for the last three years, Geri and Jim have been winter snowbirds. They spent January through March this year at the Jupiter Ocean and Racquet Club.
In addition, Geri’s participation in Biogen’s drug trial necessitates an hour-long infusion session – which was performed at Brain Matters Research in Delray Beach by Dr. Mark Brody. (Brain Matters Research is also participating in the Biogen protocol.)
“Without Dr. Brody so generously accommodating us, we wouldn’t have been able to spend the winter in South Florida,” said Jim by telephone from the couple’s New York apartment.
Recent research has shown that the brains of Alzheimer’s patients have excess buildup of two proteins – amyloid and tau.
Experts believe that amyloid causes Alzheimer’s (as opposed to it resulting from the disease’s presence), so counteracting it will hopefully either stabilize/improve a patient’s condition or, at the very least, decrease the rate of decline.
The Biogen drug – called aducanumab – “acts as an antibody to amyloid,” Brody explained.
Early test results were so encouraging that the FDA fast-tracked it for clinical trials.
In the double-blind study, Geri’s first 12 infusions may, or may not, have been placebos (neither doctor nor patient knows).
That she’s yet to experience any side effects after treatments means she’s either tolerating the drug well – or that she’s yet to actually receive it.
Recently however, back with her regular neurologist in New Haven, Connecticut, Jim said her 13th infusion was definitely the drug – as per her participation contract with Biogen. Geri will be receiving the drug for the next 3 1 / 2years.
By the time Brody next sees the Taylors – likely in early 2017 – they all will have a better idea of how well she’s been responding to aducanumab.
“Right now, her disease is relatively moderate – and the goal is to keep it that way for as long as possible,” Brody said.
Brody urged anyone who suspects that they or a loved one have early-stage symptoms of Alzheimer’s (see box) to see their doctor immediately.
“The earlier you get a diagnosis, the quicker you can take action to try to stave off the disease’s progression.”
10 EARLY SIGNS OF ALZHEIMER'S
Memory loss that disrupts daily life.
Challenges in planning or solving problems.
Difficulty completing familiar tasks.
Confusion with time or place.
Trouble understanding visual images and spatial relationships.
New problems with words in speaking or writing.
Misplacing possessions and inability to retrace steps.
Decreased or poor judgment.
Social and/or professional withdrawal.
Changes in mood and/or personality.