Two faces of Alzheimer's

By Errol Castens / NEMS Daily Journal Oxford Bureau

BOONEVILLE – Some 5.3 million Americans have Alzheimer’s – a brain-damaging disease that gradually robs its victims of mental and physical acuity.
Unless dramatic medical breakthroughs provide cures or preventives, 7.7 million are expected to have the disease by 2030, when all baby boomers will be at least 66 years old.
Alzheimer’s – the most common of several related dementias – costs the nation an estimated $172 billion each year, and it is the seventh-leading cause of death for Americans – the fourth for those over age 65.
“Alzheimer’s is a progressive, debilitating, and eventually terminal disease. We still do not know what causes Alzheimer’s, how to treat or cure it, yet we do know more about the symptoms and progression,” said Dr. Jo Ann O’Quin, a clinical psychologist and professor of social work at the University of Mississippi. “As a nation we need to support more research for eventually curing and preventing this disease – especially as our population gets older, and more people are likely to develop it.”
Statistics and descriptions, however, tell only so much. Alzheimer’s has faces, and two of those are of Beth and Jay Van Winkle. Since she was diagnosed with the disease just over four years ago, the two have used their experience to help make others more aware of the disease.
Jay Van Winkle reflects on how they’ve chosen to confront the disease, which in the past year has reduced Beth’s language mostly to smiles, nods and monosyllabic replies.
“Number one, we wanted to get it out and let people know what was going on,” he said. “That was probably the best thing we ever did, because as we told everybody and word spread, people would say, ‘I knew something wasn’t right, but I didn’t know what, and I didn’t want to say anything.’”
The Van Winkles gave an interview last year to Neal Moore, who was filing video reports from communities as he traversed the country for CNN.com’s “iReport” project.
Beth Van Winkle, who was more verbal at the time, told the world how she reacted to possibly having Alzheimer’s.
“It was scary at first, but we got past that,” she said. “Everybody knew something was wrong with me, but I didn’t know.”
In that same interview, Jay noted they had missed probably a year’s opportunity to employ drugs that slow the disease’s progression. Beth confessed to having reacted as most Alzheimer’s patients initially do.
“That was my fault,” Beth said. “I was in denial.”
The couple had met at their high school in Memphis when he was a senior and she a freshman. They dated that summer, lost track of each other, then met again 10 years later, when she was divorced, with a 2-year-old son.
They married, raised Michael together, worked, built a home, saved, started a business and watched it founder, then went back to working for others and rebuilt their nest egg, making plans for an eventual and enjoyable retirement.
Then, in 2004, they started noticing changes.

The diagnosis
Jay Van Winkle, a former salesman and manager, had switched to being a long-haul truck driver before his wife first exhibited symptoms.
“While I was out on the road, she handled the checkbook,” he said. “I noticed a couple of checks were missing, and I asked her about it, and she didn’t know.”
By that time, Beth already had quit her job as a bank teller.
“You have to balance up at the end of the day to the penny, and she got to having more and more trouble with numbers,” Jay said. Her handwriting also was deteriorating. Both such difficulties are common early symptoms of Alzheimer’s.
Beth underwent a battery of tests in 2005, including a brain scan, and had an appointment to go over the results with the neurologist.
“The day she was supposed to be there, I called and asked, ‘Well, what did they say?’ and she said, ‘I didn’t go.’ She said, ‘I knew we’d spent so much money, and I really didn’t need to go,’ Jay said. “She knew and I knew that something wasn’t right.”
The Van Winkles’ driveway won’t accommodate an 18-wheeler, so one evening in 2006 when Jay’s schedule allowed for a one-night stay at home, he decided to leave his truck in Tupelo and have Beth pick him up at a familiar parking lot.
She got lost, managing to find the parking lot only with Jay’s turn-by-turn navigation via cell phone. Even when she’d reached the designated place, her brain would not recognize his big truck across the lot.
“She’s sitting here, and she’s just kind of looking around, saying, ‘No, I can’t see you,’ Jay Van Winkle said. “So I got out of my truck and came (to) her.”
He expressed his frustration before accepting that his wife was not to blame for the predicament – a failing many caregivers would confess.
“I had a few choice words for her then,” he said. “But I knew something was not right.”
This time, Jay went with Beth, then just 58, to have the tests redone and to get the results.
“The doctor didn’t hesitate,” he said. “She said, ‘It’s Alzheimer’s.’”
Jay Van Winkle worked another year after Beth’s diagnosis, but in that time he became uncomfortable leaving his wife alone at home for a week at a time. His company refused to put him on local routes that would have gotten him home every night, so he retired three years ago. They’re facing the reality of even the physical limitations of Alzheimer’s by remodeling to create a downstairs bedroom in their two-story home.
The couple also has tried to pack in pleasure in Beth’s declining years. They’ve made several trips out West, by air and by highway – seeing the Grand Canyon and Yellowstone, Hollywood and redwoods, the Golden Gate and the Great Salt Lake. They’ve visited lifelong friends and traveled with man’s best friend.
“I wanted to make sure I could go and go and go until I ‘go to my cave,’ I call it,” Beth said in her 2009 iReport interview, referring to her dementia’s steady progression.
After seeing “The Bucket List” – a movie about two friends who are terminally ill that complete a list of adventurous goals before “kicking the bucket” – Beth decided to ride a horse and to parachute out of an airplane. She also got to meet Morgan Freeman, who was already one of her favorite actors even before he co-starred with Jack Nicholson in “The Bucket List.”
“We had planned on working another three years and then doing our traveling,” Jay Van Winkle said. “But our time is now.”
Another goal they’ve taken on is combating the disease itself.
“Once we knew what it was, we decided we were going to fight it any way we can,” Jay Van Winkle said. “She’s in a clinical trial in Memphis for a new drug. We haven’t seen any results from that yet, but every six months she gets an infusion of a drug that they’re testing.”
They also fight Alzheimer’s by promoting awareness of the disease and how people can cope with it, along with raising money for research and remedies. Both Jay and Beth have participated in the Alzheimer’s Association’s “Memory Walk” to raise research funds. Jay organizes a golf tournament for the same cause, and he helped Prentiss County Sheriff Randy Tolar raise several thousand dollars from civic groups, businesses and individuals to implement Project Lifesaver, an electronic tracking system to locate people with dementia, autism or other conditions if they wander from home.
Telling their story also has created a ministry of sorts for the Van Winkles. Their “bucket list” reports and Jay’s presentations on Alzheimer’s have generated many positive calls, notes and in-person responses.
“Her role since diagnosis is to do as much as she can to stay alert, which has gotten harder and harder over the last year or so,” Jay Van Winkle said. “My role has been to keep her in the spotlight, to make people aware.”
“One of the best changes I’ve seen in nearly 30 years of working with those with Alzheimer’s and their families is that people are much more open and informed than they used to be,” O’Quin said. “Beth and Jay especially are helping to emphasize that Alzheimer’s is a physical disease, not a stigma. They’ve responded to a devastating diagnosis with an unusual degree of openness and realism, and also strong doses of humor and optimism. They’ve given inspiration to a lot of people who really need it.”
Jay says it’s not always comfortable being in the public eye, but it’s important.
“I don’t know why her story resonates with people, but it does, and that’s our purpose, to let people be aware,” Jay Van Winkle said. “So many people don’t have a clue about what Alzheimer’s means.”
What it means for Beth is pushing back against it. As Winston Churchill braced the British people during the worst days of World War II, she echoed in her iReport interview last year, “Never give up.”