Tom Dunkel

THE BALTIMORE SUN
June 18, 2006


"How old are you, Sister?"

The question brings a sly smile to the face of Sister Agnes Barbara Hettel. "I'm 92," she replies. "I'm one of the young ones."That's an inside joke. And David Snowdon gets it. Probably only God knows more elderly nuns.

Spring and the promise of new life are in the air as Snowdon, a Kentucky neurology professor, makes his way through the halls of Villa Assumpta, a converted mansion just north of Baltimore that serves as local headquarters for the School Sisters of Notre Dame.

About 80 retired nuns live here. Most are former teachers and administrators. In younger days, they lit fires under students in Catholic schools around Baltimore and shaped careers at the College of Notre Dame.

Some keep busy working at the reception desk or maintaining archives. Some, like Sister Agnes Barbara, are full-time occupants of the third floor, a licensed medical unit.

That's where Snowdon is now. At 54, he still has an adolescent bounce to his step as he walks the corridor. He could be a politician courting shut-ins, a battlefield general bucking up troops.

"Hi, Sister, how are you? ... Thanks for all your help. ... Keep me in your prayers, please."

Twenty years ago Snowdon began groundbreaking research that now encompasses nearly 700 School Sisters across the country, including those he's chatting up today. As participants in his "Nun Study," these sisters undergo annual physical and mental tests that gauge the effects of aging. Snowdon will track them until the day they die -- and beyond.

Their hope is to unravel some mysteries of Alzheimer's disease, the creeping dementia that affects 4.5 million Americans and, at a cost of $100 billion annually, ranks among the country's most expensive health problems.

The School Sisters in Snowdon's study left the classroom behind long ago. Now they're teaching a larger audience what it means to age well and with dignity.
That's a lesson worth imparting. America, like the School Sisters, is going gray. Millions of baby boomers are completing their long, strange trip from rock `n' roller to Social Security recipient. And potential Alzheimer's patient.

Over time, the fortunes of Snowdon and his School Sisters have become intertwined. Like strands of a church bell rope. Like two hands clasped in prayer.
The Nun Study has been the subject of a Time magazine cover story, a Nightline broadcast, radio shows, innumerable articles and one book, Aging With Grace, written by Snowdon.

It has been credited with two landmark findings: establishing a link between vascular episodes, such as stroke, and the onset of Alzheimer's, and confirming a belief that intellectual activity helps ward off the disease.

The study not only shed new light on Alzheimer's, but also bent the usual rules of engagement that separate researcher from subject. Snowdon and the sisters turned into friends. Their story is as much about the simple humanity of their relationship as it is the complexities of science.

For the School Sisters this is just another mile marker on a long road of service. Not for Snowdon.

"I don't know if there's going to be anything quite like it done again," he has said.
Continuing his rounds, Snowdon taps on Sister Helen Fellenz's open door. She is 94 and for many years taught music at the order's schools in Japan.

"I feel honored for you to come see me," Sister Helen says softly.

"Thanks for all you've done being part of the study," Snowdon tells her. "The book just last year was translated into Japanese. ... How do you say `thank you' in Japanese?"

"Arigato."

It is the last time the two speak. Before Snowdon can pay her another courtesy call at Villa Assumpta, Sister Helen will die of heart failure, reducing the number of living Nun Study participants to about 150, less than a quarter the original total.
Like all School Sisters, Sister Helen received the traditional Mass of Christian Burial, laid to rest wearing her SSND pin, a crucifix and rosary. But as a Nun Study sister she had a parting gift for Snowdon: her brain.

"We have it down to a system," says Sister Bernice Feilinger.

Sister Bernice, coordinator for the Nun Study at Villa Assumpta -- informally known as "the motherhouse" -- makes sure the bodies of all sisters in the study are immediately transported to Johns Hopkins Bayview Medical Center. An assistant pathologist removes each brain, placing it in a container of formaldehyde, where it sits 10 days before being shipped inside a foam-lined cardboard box.

By the time that package reaches its destination, a eulogy will have been delivered, and mourners' tears shed and dried.

In the Notre Dame community there's a saying popular among those School Sisters who have volunteered to take this road less traveled to eternity:
"When we die our souls go to heaven, but our brains go to Kentucky."


The disease detective


It is believed to be the largest, most thoroughly documented collection of its kind: 520 human brains and counting. Snowdon, by training an epidemiologist -- a disease detective -- is their keeper. He stores the specimens, chronologically by date of death, in a temperature-controlled room at the University of Kentucky Medical Center in Lexington.

Growing up in California, Snowdon was educated in parochial schools, where he contracted a "grade-school fear of nuns." He got along better with chickens, developing into a prize-winning breeder of Rhode Island Reds: monitoring egg production, charting weights, becoming a student of avian vaccines.

"David the Eggman," as he was known around the neighborhood, blossomed into a scientist. In 1986, while completing his doctorate at the University of Minnesota, Snowdon began a pilot project on aging. For his control group, he chose a community of School Sisters of Notre Dame in Mankato.

Nuns make ideal research subjects. They have nearly identical lifestyles in terms of health care, diet and routine. Variables such as smoking, drinking, and sexual activity are all but nonexistent.

"Initially, I was probably a little hesitant or shy getting to know them," Snowdon says. "Over the years, the nuns have turned me into a cream puff."

In 1990, Snowdon joined the University of Kentucky Medical Center's faculty and its Sanders-Brown Center on Aging. By then his study had widened in scope to include the order's sisters from all over the United States. Conversely, his focus had narrowed -- to Alzheimer's, the brain-tangling disease made for melancholy metaphors: of unmoored minds drifting into space, of puddled souls evaporating before their loved ones' eyes.

Snowdon's timing was nearly perfect. In the early 1990s, substantial government funding was beginning to flow into Alzheimer's research. An age-driven crisis loomed.

According to the Alzheimer's Association, 10 percent of people over 65 exhibit some degree of the disease; by 85, that number jumps to 50 percent. These are among the fastest-growing segments of the population.

Much of the Alzheimer's landscape remains terra incognita, though two signature characteristics are well-known. Minute fragments of beta-amyloid proteins collect outside brain cell walls and around nerve-pulse-transmitting brain neurons; biological roadside litter. Similarly, protein-based microtubules (the connecting threads between neurons) inexplicably tangle and knot.

It's uncertain whether plaque debris and tangles are a cause or an effect of Alzheimer's. There's no doubt they multiply. In advanced stages, plaque and tangles can be so extensive that the brain shrivels, as if life is being squeezed out.
In an attempt to better understand this microscopic battleground, in 1991 Snowdon made a bold request of all U.S. School Sisters who were then 75 or older: Would you give me custody of your brain after you die?

To his amazement, 678 sisters consented -- an extraordinary compliance rate of 66 percent. This is the group he has followed ever since.

Embryonic stem cell research violates Catholic doctrine, but no prohibitions apply to organ donation. Indeed, the giving of brains became the Nun Study's trademark.
"When he came up with this design, it was absolutely innovative, no question," says Dallas Anderson, a program director at the National Institute on Aging in Bethesda, principal source of the $12 million in grants the Nun Study has received.

Perhaps foremost the Nun Study underscores a conclusion reached by less-ambitious research efforts: the importance of staying intellectually and socially engaged through the arc of adulthood. Some vibrant School Sisters lived to be 100 without sliding into dementia, though autopsies showed their brains to be riddled with plaque and tangles. The march of Alzheimer's seems to be stymied by an active mind.

On a related front, after analyzing hundreds of the autobiographies the School Sisters must write upon entering the convent, Snowdon made a startling connection: Those young women whose prose was least creative and optimistic were most apt to develop Alzheimer's. There's an 80 percent correlation. Why? His guess is that, decades before symptoms appear, these brains have been "compromised" by the disease.

The Nun Study hasn't made headlines of late. Last year Snowdon published only two papers. That doesn't trouble him. He insists his brain bank will pay dividends far into the future.

What's more, Snowdon -- a workaholic bachelor -- has learned as much from the School Sisters' hearts as their heads.

"I'm convinced," he says, "that at the beginning of life and the end of life, when you're most vulnerable, it's important to have people around you who love you and know what you're about. I want a piece of that."


Arts and crafts


In the beginning there are lumps of clay and bolts of cloth. There are sequins, buttons and bows, plus rivers of paint.

As in the Book of Genesis, it is all "without form and void."

Then Sister Clara Beall's mind pictures creations: a turtle pillow, fuzzy Easter chicks, a miniature Nativity-scene-inside-a-half-crab-shell Christmas ornament.
"That pile of white?" she says, nodding at what appear to be fluffy blankets. "That's really lambs. ... You think that's a bag of fabric? No, that's rabbits."

Sister Clara, a tireless 73-year-old woman given to exclaiming "okey-dokey," is a graduate of the Maryland Institute College of Art. About 20 years ago, superiors asked her to stop teaching school and start an arts-and-crafts program at the motherhouse.

In some respects, the motherhouse operates as a senior citizens center. There are staff nurses and physical therapists. There are organized games like "Mind Benders" and "Bible Trivia." And there is Sister Clara's hobby room. Five worktables are squeezed into the former chapel, surrounded by storage cabinets and mounds of supplies. Boxes are stacked head high, each bearing a cryptic label: "Squat Clowns," "Prayer Rocks," "Spool Angels."

"The good holy nuns think it's a bit of a mess," acknowledges Sister Clara, who can be found amid the clutter from dawn until dark, filling pottery molds, running the sewing machine, doing fine-detail painting that's too difficult for her hobby room attendees.

About 15 sisters show up Monday, Wednesday and Friday mornings. Some are physically and mentally sharp. About half use walkers or wheelchairs. A few come with minds clouded by Alzheimer's. It sounds as if wind chimes are tinkling inside the hobby room. A dinner bell sits on every table. The arts-and-crafts sisters use them to summon Sister Clara.

Ding. Ding. "Need more paint?" Sister Clara asks.

Ding. Ding. "Are you finished, Sister?"

Bit by bit, hundreds of dolls and crafts get completed. Every fall, Sister Clara holds a sale to clean out her inventory. Her cash box runneth over. But the money isn't important. The annual sale is a confirmation of that bone-deep need to feel "still useful," she says, a blessing upon her hobby room nuns.

A number of them are part of the Nun Study. Sister Clara, in her gentle, unscientific way, has as much experience with aging as Snowdon. She has a knack for finding the gifts inside those with seemingly little left to give. Sister Charlotte Beierli, for example, is 94. Her vision and hearing are failing. She often lists to one side in her wheelchair. She comes to the hobby room and performs the simplest of tasks: sticking pin after pin into stuffed animals and quilts, marking seams Sister Clara will sew.

"Deterioration is hard to watch," Sister Clara says. "These were once vital women."

She can spot the first flickers of dementia before a diagnosis has been made. Sisters mismatch paint colors or sometimes talk to their long-dead mothers. It's as if the mind turns a corner, says Sister Clara -- and she must then find that sister easier craft work to do. There's no such thing as failure in her hobby room. You can almost hear Snowdon's voice echoing: "When you're most vulnerable, it's important to have people around you who love you."

Some healthier School Sisters won't set foot in the hobby room. They feel awkward, uncomfortable. But every day, to the sounds of Mitch Miller and Montavanni playing in the background, Sister Clara witnesses the power of persistence and adaptation, evidence of the brain's infinite capacity to surprise. Consider Sister Clementa Kieffer, now deceased. She declined to the point of mindlessly slathering paint on top of paint. She finally stopped coming, then, months later, reappeared.
Unsure what to do, Sister Clara placed colored felt pens in front of her. Sister Clementa responded by executing a series of graceful flower sketches that today hang in the motherhouse's dining hall.

"You explain it," Sister Clara says.


`To strive, to seek'


"I like to keep busy. It keeps my mind off myself," Sister Mary Agnes Klug says.
Sister Mary Agnes -- a small, scrappy Orioles fanatic, who can remember the winning word (s-o-c-I-e-t-y) that made her a third-grade spelling champ -- manages the motherhouse gift shop. Just a few steps from Villa Assumpta's main entrance, the cramped shop is the School Sisters' general store.

Customers can find hobby room crafts, used books and bric-a-brac, greeting cards, Blessed Mother figurines, and bargain-basement junk food. Retailing is in her blood. Sister Mary Agnes' father owned Klug's Uniforms, a downtown supplier of workplace apparel that's still going strong. She taught chemistry at SSND schools before spending nearly 40 years at the College of Notre Dame as director of admissions and then planned giving. After leaving academic life, Sister Mary Agnes came to the motherhouse. Ten years ago, she opened her shop.

"She could sell sand to the Arabs," says Sister Clara.

Despite serving as Sister Clara's sales rep, Sister Mary Agnes keeps a safe distance from the hobby room: It's for "retired people." She also has an aversion to taking naps -- they're for "older people."

Sister Mary Agnes is 97.

Sometimes Sister Genevieve Kunkel, 95, tends the gift shop. The two have known each other since their days at Notre Dame Prep. Both went to the College of Notre Dame and became School Sisters in the 1930s. Sister Mary Agnes is a no-nonsense product of the chemistry lab. Sister Genevieve -- a voracious reader whose father owned a piano store -- earned a master's degree in English and taught at SSND schools in Boston and Tampa for years, then became a curriculum adviser to undergraduate nuns at the College of Notre Dame. She moved to the motherhouse in 1991, in part because there were no more young nuns to advise.

Their polar-opposite personalities are grounded in the same faith. They entered the convent when commitment of steel was needed, when being a nun meant being encased in a full habit, bathing only on Saturday, refraining from idle conversation and having limited contact with family. Years later, neither woman hesitated when Snowdon solicited donors for his Nun Study.

"I'm a scientist," Sister Mary Agnes says. "What do I care if they take my brain?"

Sister Genevieve opted to bequeath her whole body. "I feel whatever I can contribute to the future, I should," she says, her words always carefully chosen as if plucking the best fruit off a tree. "Otherwise, I'd never have been an educator."

Snowdon and Sister Genevieve appeared before a congressional committee to lobby for Alzheimer's research funding. Five years ago, they discussed the Nun Study on the Today show. These days she can't raise a Communion chalice to her lips unassisted. She leans on a cane for support but stands firm as far as reading The New Yorker and only quality fiction.

Sister Genevieve likes to recite snippets of favorite poems. She is partial to Alfred Lord Tennyson's Ulysses, in which the grizzled warrior exhorts his crew to take to the sea once more:

Tho' much is taken, much abides; and tho'
We are not now that strength which in old days
Moved earth and heaven, that which we are, we are;
One equal temper of heroic hearts,
Made weak by time and fate, but strong in will
To strive, to seek, to find, and not to yield.



Testing


Snowdon has about a dozen full-time Nun Study employees. One of his first hires was Sister Gabriel Mary Spaeth, a School Sister from Milwaukee. At 74, she says she's "amazed at and intrigued by" the workings of the brain. She has seen many in action. Now easing into retirement, Sister Gabriel Mary spent 15 years driving from one School Sisters location to another, administering Nun Study performance tests. Perched on the dashboard of her Plymouth Voyager is a doll with golden hair, a good-luck charm from Sister Clara.

Every nun is tested each year, in two hourlong sessions over two days. The first involves basic skills: doing step-ups on raised blocks, walking a line as fast as possible, buttoning a sweater. The second component is a mental aptitude exam, a sort of brain Olympics that many sisters dread. It entails tasks such as replicating complex drawings and answering questions about a long story read aloud.
About 7 percent of Snowdon's subjects have dropped out. The testing became too fatiguing, or too embarrassing. An ever-dwindling majority, though, stuck with him.

"I'm just so edified by these sisters, their faith, their trust in God," Sister Gabriel Mary says.

During a stop in Baltimore, she switches on a VCR inside a workroom at the motherhouse. On tape is a memory test she recorded the day before. The nun on camera has just been asked to repeat a list of 10 random words.

"This is exceptional," Sister Gabriel Mary says. "Her memory is very good."
Not according to the test subject captured on tape.

"That's not very good," Sister Mary Agnes can be seen muttering. "My memory has slipped a little. I know that."

She is visibly irked at having remembered only eight out of 10 words, though Sister Gabriel Mary says that anyone who gets five right is "doing well." Sister Mary Agnes seems to take this whole testing business personally, as if the devil himself is trying to trip her up, trying to worm his way into her brain. Even simple questions spark mini-sparring matches.

"Without looking at your watch, what time is it?"

"About 9:21."

"What city or town are we in?"

"We're not. We're in Baltimore County."

"Tell me how many kinds of animals you can name in one minute."

Sister Mary Agnes reels off a long list, beginning with dog, cat and bird, then looks squarely at her questioner. "Insects?" she asks. "Do they count?"

Test subjects with more muddled minds often freeze on these memory questions. At other times there are heartbreaking flashes of clarity. Sister Gabriel Mary recalls one nun who spoke nothing but gibberish, then suddenly stopped and whimpered, "Help me."


`A gift'


Age is a delicate issue in religious communities today. Of 300 School Sisters spread from New Jersey to Florida, three-quarters are 65 or older. Aside from being the liaison to Snowdon, Sister Bernice Feilinger serves as medical social worker for the motherhouse, teamed with Sister Bernadette Walsh. About half the health problems they encounter are dementia-based. Sister Bernice's "role model," now a resident of the third floor, is one of those sisters lost in the fog of Alzheimer's.

"It's painful to see her decline," Sister Bernice says. "But I still know the person that they are inside. In some ways that still comes through."

Despite their involvement with the Nun Study, the School Sisters struggle with the realities of Alzheimer's like any family. There are sisters who mistakenly believe the disease is a byproduct of old age or that it's contagious. They're sometimes taken aback by Alzheimer's patients, who in later stages can lose inhibitions or become aggressive.

"Some of the sisters were really offended by some of the behavior they were seeing," says Diane Wit, director of education for the Greater Maryland chapter of the Alzheimer's Association. "If a sister [with Alzheimer's] would curse, they would reprimand her or make her feel bad or argue back."

The leaders of the motherhouse recently formed a Dementia Study Committee. They plan to hold an "awareness day" to educate all sisters, maybe start a support group. They're considering aesthetic changes that will make the third-floor medical unit more like a home than a hospital: softening the lighting, eliminating overhead intercoms.

But the greatest resource they have to draw upon is intangible. "I love sitting with the sisters who have Alzheimer's," Sister Bernadette says. "They teach us about living life in the moment. I think they're a gift to us. The gift they give is the simplicity, their unconditional love."


Stimulation


Sister Mary Agnes avoids the hobby room but takes the elevator up to the third floor several times a week. She dawdles an hour or more, checking on friends she has known 50 or 60 years. Sister Maura Eichner can usually be found sitting alone in her room, looking prim in a print dress, her round face locked in a faint smile. She once taught at the College of Notre Dame and wrote books of poetry. Her thoughts are mostly her own now.

"She's in her 90s and has retreated into herself," says Sister Mary Agnes, who sits by her side and carries on a one-way chat. They met in 1942. Since the motherhouse doubles as a medical facility, by law the School Sisters must provide a range of patient services. Sister Kate Whalen – a stout woman with a loquacious bartender's disposition -- is activities coordinator. She says of the elderly, "Without stimulation, they're going to die."

Most of the stimulating Sister Kate organizes takes place on the third floor. At one end of the hallway, a discussion group explores the spiritual implications of thunderstorms and rainbows. At the other end of the hall -- at the opposite end of the cognitive spectrum -- a frailer group of sisters beat therapeutic tom-toms. When words lose meaning, the mind subsists on sound.

Tuesday nights Sister Kate leads a "Music & Memories" singalong on her guitar. A handful of sisters gather in a semicircle. She strums a turn-of-the-century tune called "School Days", then says, "Who remembers reading, writing and 'rithmetic? Remember anything about your school?"

"You had to have your homework done or you stayed after school," says Sister Marianna Tomko.

"They had to go to the blackboard and diagram sentences," says Sister Mary Joseph Staab, drifting back to her days as an English teacher. "They liked it 'cause they got out of their seats!"

"Where did you teach?" Sister Kate asks, eyeing a thin, shy nun.

Sister Frances Zeller pauses, as if sifting through the broken glass of those years. "I don't remember," she says.

They warble "Daisy Bell" and "In the Good Old Summertime" and "Take Me Out to the Ballgame." But one particular melody is a favorite. Of all things, a sentimental saloon song, suddenly imbued with deeper meaning. The "Music & Memory" sisters can't get enough of "Show Me the Way to Go Home."


Faith and God's Will


The $5 million grant currently funding the Nun Study ends in February. Some within the National Institute on Aging hierarchy think David Snowdon has hit a wall. They contend that it would serve him well to add a group of younger nuns.
"People bring that up pretty regularly to me," he says.

Snowdon is uncomfortable schmoozing bureaucrats but enjoys giving briefings to the School Sisters. The morning of his visit to the Baltimore motherhouse, he tells a packed conference room that the Kentucky brain bank is invaluable. "Many, many applications," including drugs to combat Alzheimer's, are on the horizon. "I have absolutely no doubt that the study will be going on for decades," he adds.

That prospect used to worry him. Snowdon feared Alzheimer's had his career in its clutches, that he'd been typecast by his success. Gradually he came to appreciate the "enduring value" of the study. Also, the School Sisters showed him that a life can have second and third acts. Art teachers run hobby rooms. Retired nuns turn into gift shop managers. "In the future," Snowdon tells his motherhouse audience, "I see us getting into Parkinson's and other brain diseases."

He takes questions from the floor. The first hand that shoots up belongs to Sister Mary Agnes. "Most of us in the study are in the older phase," she says. "Aren't you planning on getting a younger group?"

Will there be a Nun Study II? It's not that simple. Part of him is tempted. But part of Snowden feels like a man surrounded by surrogate grandmothers to whom he's fiercely loyal. Emotion crept into the laboratory. Snowdon attends sisters' wakes, stays overnight at motherhouses, joined the College of Notre Dame's trustees. When his brother contracted cancer, the sisters included him in their prayer chains.

"I don't want to go out and sign up Notre Dame sisters just to get sheer numbers," Snowdon says.

Then words tumble out of his mouth that sound like something Sister Clara would say: "I feel a pretty strong moral obligation to stick to my knitting."

The School Sisters have obligations, too. The same blood pumping through Tennyson's "heroic hearts" flows through them. They will keep the motherhouse open, the hobby room humming, the study going as long as Snowdon wants.
But the sisters also know that questions -- like prayers --sometimes go unanswered. Alzheimer's disease could be a perpetual puzzle. Science may never unravel those brain tangles. A cure is a matter of faith, they say. And God's will.

Sister Genevieve -- the Today show guest who at 95 gets kidded about being the Nun Study's poster child -- wouldn't bet against a breakthrough. That's her nature: "My favorite virtue is hope. If you hope, you cope. If you don't, you mope."

Her lifelong friend is wired differently. Old nuns are "supposed to be contemplative," and she's not. She has no idea if the School Sisters will make medical history.

"All I know," Sister Mary Agnes says, "is the Lord has been good to me to keep my legs strong -- and my brain going."



© 2007 The Baltimore Sun and may not be republished without permission.