NPR has been following Pansy and Winston Greene, a California couple struggling with an Alzheimer's diagnosis. Three years ago, Pansy learned she had Alzheimer's disease, and over this past summer, the couple told NPR that their day-to-day lives haven't changed much. That's still true. But on this second visit, they each seem to be looking at the future a bit differently.
Pansy Greene says her secret to maintaining a normal life is to keep active. She's almost never without a book of crossword puzzles; she reads her Bible daily, babysits her grandkids and goes for walks. She's also become passionate about raising awareness of Alzheimer's disease.
So on a recent morning, she and Winston were at the Los Angeles office of the Alzheimer's Association. They're on the planning committee for a forum on the early stages of the illness. The committee includes both staff members and people who, like Pansy, are in the early stages of Alzheimer's.
African-Americans are roughly twice as likely to get the disease as whites, so Pansy wanted to make sure the organization was reaching out to her community.
"They don't know where to go. They don't have the money to get all that testing and stuff," she says. "That's in our neighborhood. That's what the black people do. They can't afford [testing], so they just say 'I can't do it.' "
Winston adds that this may not be just an African-American problem. "It's probably in other ethnic groups also. We're just so close to it and see so many in our [extended] family."
There are moments when this meeting feels as much like a support group as a planning committee. Pansy slides seamlessly from discussions of how to persuade Alzheimer's patients around Los Angeles to come to the forum to how to get her own relatives who have the disease to follow her example and take action.
"I gotta reach out more," she says. "They're not listening." She says they need to know what she's done to keep herself active and take charge of her life. "I'm not letting this other thing take control. I'm in control."
Everyone in the room laughs in appreciation of Pansy's fierce determination. But across the table from Pansy and Winston is living proof of how little control of this disease there is.
Jonathan Blumberg, another member of the committee who has Alzheimer's, wants to offer his own suggestions on outreach but the words don't come. There are long pauses between phrases, lots of ums and ahs. He apologizes. Everyone tells him to just take his time and waits patiently while he completes his thought.
'There Is Still Fear'
That's the thing about Alzheimer's. There's nothing that really stops its relentless progression. And if you're with a group of fellow sufferers, someone will be further down that path. Winston sees this at the support groups he attends. It gets to him.
"There is still fear," he says. "Not so much denial, but fear. ... You're with people that are that much advanced, and you're thinking, oh my gosh, this could be our journey."
Winston and Pansy Greene have been on a journey together for 57 years. She was 16 when they married; he was 18. They have three daughters, seven grandchildren and two great-grandchildren, most of whom live nearby.
Pansy may be having trouble with short-term memory, but she and Winston have plenty of long-term memories to share — of family and travel and decades when they both worked in the aerospace industry.
"I think it's a blessing for me being where I was," says Pansy. While she was working on the space shuttle, she met astronauts and even Queen Elizabeth. "I got all those wonderful memories. God brings those things to me," she says. "So that's why I stay positive. I don't like being negative."
And she thinks Winston is — just a little bit. A few months earlier, he said he didn't look ahead. It would make him crazy. Now, he says he's gotta be realistic.
"I can't be unrealistic about where this journey goes [because] there's no cure!" Winston says. "How could I be unrealistic to think that tomorrow things are going to change and she's gonna be back like she was before the diagnosis. That would be really unrealistic."
That's just the way Winston is, Pansy says. "But ... I'm not giving into it. He's thinking that way, I'm thinking positive, and that's who I am."
The Greenes have spent 57 years accepting each other for who they are. They have no plans to stop now.