Until three years ago, Ed Hancock traveled the world, a high-level executive for AmerisourceBergen, a global drug packaging and distribution company.
Now at 66 he’s retired, living on a mini-ranch near Ocala. He and his wife Diana spend a lot of time out back at their stable, where they take turns riding Zip, their Rocky Mountain trail-riding horse.
“Sometimes I’ll ride, sometimes she’ll ride,” Ed said. “Once we get back to two horses, we’ll ride together again.”
Diana’s doing a lot of the riding lately. Something else is taking up Ed’s time: he’s a board member of the regional Alzheimer’s Association.
Diana said she understands why her husband is so involved.
“When we first started talking about Alzheimer’s, it must have been 30 years ago, when his parents first got it. And we’ve been talking about it ever since, thinking it’s inevitable,” Diana said. “And then when his sister got it – (she’s) the other remaining family member -- so we’re pretty sure it’s in our future.”
And then there’s something else pulling Ed away from the ranch: a clinical trial. Though Ed doesn’t yet have symptoms of Alzheimer’s disease, a PET scan last year showed his brain was dotted with amyloid plaque.
That meant he qualified to participate in a three-country “double blind” clinical trial that is testing whether a drug can prevent the disease by washing the plaque out.
Once a month, he drives from the ranch to Tampa and the Byrd Alzheimer’s Institute at the University of South Florida. It’s one of six sites in the state participating in what’s called the A4 trial.
There, he and nurse Beth Major joke around as she hooks him up to an IV, which for an hour or so sends either the drug or a placebo flowing into his arm. Ed doesn’t know which.
“Beth is a pro, doesn’t hurt going in, doesn’t hurt coming out, and we have a lot of fun in between,” he said.
'We're pretty sure it's in our future.' - Diana Hancock of her husband's family history of Alzheimer's disease.
During the treatment, Ed talks about how he first discovered that his father had the disease.
“We were sitting there, having a conversation…I was trying to have a conversation,” he said. “And (his father) said, ‘Did we use to work together’? No, no, Dad, we didn’t...So then I knew. “
During later visits to his parent's Kentucky home, Ed said, his father tried to cover up memory gaps.
“I would walk in and he would be effusive. ‘Hey! Look who’s here! How’s the family?’ (He) didn’t know who I was,” he said.
Finally, there came a time when Ed said the visits home just upset his father.
“I became an intruder. And the affection I would show for my mother became a problem. Same with my sister,” he said. “I used to always stay at their house when I would visit, and I could no longer do that.”
Ed’s older sister, who spent 10 years taking care of their parents, was diagnosed herself with Alzheimer’s about seven years ago. Ed said by the time her husband started checking out clinical trials, it was too late.
“And he said, ‘Well, I guess we should have started earlier,’” Ed said. “And that rang a note for me.”
That led him to a website: ALZ.org. He found the ‘trial match’ service of the Alzheimer’s Association, and enrolled in the A4 trial about a year and a half ago. He still has about that much longer to go.
Diana Hancock said she hopes Ed is getting the real drug.
“If we’re spending 3 years doing this, and it’s the placebo, that’s going to be really disappointing,” she said. “Or if it doesn’t work…”
Ed interrupts, reminding his wife why he signed on. “Somebody has to be part of the trial for any science to be done,” he said.
She understands: there’s a bigger reason behind this uncertainty.
“And then, there’s the kids,” she said. “If something can be found, maybe the kids or grandkids can be saved.”
Carol Gentry is a special correspondent for WUSF in Tampa. WUSF is part of Health News Florida, which receives support from the Corporation for Public Broadcasting.
