Both natives of Providence, they first met in kindergarten. They became high school sweethearts before Ray went on to graduate from Providence College and Elaine from the nursing program at Rhode Island Hospital. They got married in 1966, and traveled the world together during the first 20 years of their 53-year marriage.
From Alaska to Panama and many places in between, they raised their two sons while moving 17 times during Ray’s career as an airman and Lieutenant Colonel in the Army. The early years included a tour in Vietnam and a period serving as a paratrooper for Ray, before he became a fixed wing and helicopter pilot. Elaine worked in general medical units in various US and Panama locations, as well for 19 years at United Health Care.
When Ray retired from the military, the couple settled back in Rhode Island and put their energy into a series of successful business ventures, including the first Mailboxes, Etc. franchise in the state and a real estate brokerage.
Neither Ray nor Elaine have Alzheimer’s disease, or any cognitive impairment. Their involvement with the Memory and Aging Program at Butler Hospital first began when Elaine’s mother, who had Lewy Body Dementia, participated in one of the program’s studies.
After her passing, Elaine decided she wanted to be informed about her risk. So she volunteered for a research study and underwent screening for amyloid plaques in her brain, which are believed to lead to the development of Alzheimer’s. Ray followed suit and, as they’d done with everything else in their lives, they did it together.
They’re both now participants (as well as each other’s study partners) in ADNI-3, a five-year observational study aimed at determining the relationships between clinical, cognitive, imaging, genetic and biomarker characteristics of Alzheimer’s. The study includes people who are cognitively normal as well as those with mild cognitive impairment or early Alzheimer’s.
“With her family history, I thought for sure that Elaine would have [the plaques]. But it turns out she didn’t – I did, and with no family history. It was a real surprise,” Ray said. “Elaine holds it over me all the time,” he finishes jokingly.
Ray isn’t showing any symptoms of Alzheimer’s, and thus far tests have indicated no further development of the plaques. He says he’s thankful for that, of course. But he’s also thankful for the opportunity to continue monitoring their development for several years through the study – and for the chance to contribute to research he hopes will lead to an end to Alzheimer’s someday soon.
“It’s something that’s going on so much around us at our age, and I feel [participating in the study] makes me very well versed to understand and talk about it, and more comfortable that I can handle the issues,” Ray says.
“I’m not crazy about the fact that I have the potential for Alzheimer’s, but it helps me understand it and I try to do things to help. Every day you see a different article on things you can do, and I can evaluate it based on what I hear and see through the study, and talking with people from the study group,” he says.
Elaine says she wishes others would better understand the advantages of participating in research and be less driven by fear.
“We find a lot of people don’t want to know their risk or don’t even want to get into a discussion about it. Some of them are surprised at how involved we’ve gotten and how much information we want to know,” she says.
“But it can actually really help to put your mind at ease. We had the gene testing done and found out neither one of us has any of the combination of genes that we would pass on to our kids, so that was comforting. And even if you find out something negative, like Ray did, now we have the ability to plan for that risk, both for ourselves and for our kids. It’s what the individual takes from it,” she says.
Both Ray and Elaine say they hope more people will get involved, and want to spread the word that raising your hand to participate does not mean you’ll have to do anything you don’t want to do. They also recommend finding someone to participate with, as they have done together.
“It’s really helpful to participate together. You can bounce questions off each other, and to be honest we’re happy we can do it, we’re fortunate we can and it’s kind of an honor to my side of the family, with it being so prevalent,” Elaine says.
“I would advise people to just take an exploratory trip to Butler and talk to the people at the Memory and Aging Program. There’s no commitment, it’s very professionally run and if it turns out you don’t’ want to do it, that’s fine,” Ray says. “But give yourself the opportunity to examine the possibility of getting involved with an Alzheimer’s study, on your own grounds and temperament and comfort level.“
To learn more about the Memory and Aging Program and how you can get involved, visit butler.org/memory.