It has been nearly five years since Joel and Nancy Johnson got the news they were completely unprepared for.
"Boom. I'm sorry. It was scary. You're thinking, I'm too young for this," she said.
The diagnosis was early-onset Alzheimer's; Nancy was just 52. They had known for a while she was having memory problems but didn't know why. It became clear one night she was reading a book called "Still Alice."
"And she came downstairs with this book in her hand, just sobbing, saying I'm reading a book about myself," said Joel.
Joel and Nancy would quickly find out what they were up against, and the outlook was grim.
"Nobody's ever survived this disease. It is terminal in 100 percent of the cases," he said.
Life expectancy from a diagnosis is four to seven years on average for someone with early-onset Alzheimer's. They decided to be transparent and opened up to family and friends.
Joel joined a support group. Then through the Alzheimer's Association of Washington, they began telling her story. That led to a meeting with Congressman Dave Reichert who co-sponsored a bill in 2015 that would later lead to a drastic increase in Alzheimer's funding at the National Institutes of Health, almost quadrupling to a projected $1.9 billion this year.
The Johnsons hope that research will result in better treatments and eventually a cure, but know it most likely won't help Nancy.
"Right now I'm in the process of searching for a part-time caregiver to come into the house and be more of a companion than a care provider," said Joel. "Someone that can help her with tasks around the house, make sure she gets food and takes her medication so that I can continue to work."
When she lost her ability to drive, her world got a lot smaller. Now she walks the neighborhood, under one condition.
"His rule is I have to have my phone, my cell phone on me at all times, because he's worried at some point, and that likelihood will happen, is that I'll stop and go, I'm not sure where I'm at," said Nancy.
"We think about it, it's just a normal part of aging. Well, when you see it at 52 you understand it's not a normal part of aging," said Joel.
Nancy wants to stay at home as long as possible to continue making memories with her family but knows it can't last forever. This weekend they will head to Washington, D.C. for a 3-day annual Alzheimer's conference, hoping to convince more members of Congress to make Alzheimer's a national priority.
