Ambassador of hope

Spotting a rough blazing star amid countless other native flora in a great prairie, Mary Kay Baum abandons the path and makes her way to it. It's a warm September day. The ordained Lutheran pastor and longtime social justice advocate wears a broad-brimmed hat and long-sleeved denim shirt to ward off the sun. The cuffs of her pants are tucked into her socks to keep out ticks. One hand clutches an adjustable hiking staff, the other a camera.

"Being around nature and seeing nature, even in a photograph, is a healing thing," says Baum as she drops into a crouch to compose her photograph. "It's also an exercise thing, because there's no way I can get to this native flower without quite a bit of hiking. It's almost like another form of exercise, like yoga, when you're trying to take a photo. You take these positions to get just what you want." She presses the shutter release.

Baum, 62, has for the last several years lived with a probable diagnosis of early-onset Alzheimer's, a form of the progressive neuro-degenerative disease that strikes before age 65. Yet the former Dane County supervisor, Madison mayoral candidate and school board member appears agile, lucid, engaged in the world.

Since stepping down as director of Madison-area Urban Ministry at the end of 2005, she has remade herself as an advocate for Alzheimer's research, treatment and understanding. She gives talks on the topic and is the central focus of The Hope of Alzheimer's, a documentary-in-progress by veteran local TV producer Dan Smith.

This new direction in Baum's life comes as scientists are bringing renewed vigor and more advanced techniques to their pursuit of solutions to Alzheimer's puzzles.

There is a growing sense of urgency to this quest. In the U.S. alone, as many as 5.3 million people are estimated to have Alzheimer's, and the number continues to climb as people live longer.

With the front edge of the baby boom entering retirement and some projections estimating Alzheimer's cases will double or even triple by 2050, the disease presents the prospect of looming crisis. The federal government now funds more than 30 Alzheimer's Disease Centers across the country, including one that opened last year at the UW-Madison.

But what Mary Kay Baum is doing is also important. In presenting herself as an intriguing and willing research subject, she is helping, as she's done on other issues for much of her life, to knock down barriers and open doors.

Beyond that, Baum has become a kind of ambassador of hope in the face of Alzheimer's. Her message is that people can not just survive the disease, they can thrive with it.

Researchers' interest in Baum extends to her family. Baum's mother, Beulah, died of Alzheimer's in her mid-70s. An aunt also succumbed to the disease. One of Baum's two sisters, Chris Baum Van Ryzin, now 61, first noticed subtle signs of the disease when she was 41. Symptoms compelled their youngest sister, Rosann Baum Milius, to leave work in August, at age 49, to undergo testing. She has since applied for long-term disability.

"Researchers get interested when so many in one family have early onset," Baum explains. "We now have researchers almost vying over who gets to study our family."

There are also six brothers. None have exhibited symptoms, Baum says, but at least two are participating in a long-term study at the UW-Madison's Wisconsin Alzheimer's Institute.

Though early-onset familial Alzheimer's disease is rare, it has been linked to a few specific genes. Baum's family presents an opportunity for scientists to investigate the role played by genetic and environmental factors.

In November, Baum and her sisters drove to Indiana University's Stark Neurosciences Research Institute at the invitation of its director, Dr. Bernardino Ghetti, a leading authority on hereditary pre-senile dementias. During a whirlwind week with Ghetti's team, the sisters underwent high-tech scans, lumbar punctures and neuropsychological exams. They left blood samples and family medical records that may help scientists isolate their shared Alzheimer's factors.

Even if there is no cure in her lifetime, Baum is determined to push back against the disease, slow or perhaps even stall its progression, and manage her symptoms. This she does by exploring a combination of lifestyle and dietary changes, and keeping current with contemporary advances in research.

It's quintessential Baum - never keen to accept the status quo. Born in 1947 in Appleton, she grew up Catholic on an Outagamie County farm with her two sisters and six brothers, excelling at dodge ball, studying the accordion, entering 4-H speech contests, working summers as a lifeguard and swimming instructor. She majored in Hebrew studies at UW-Madison, where she also took her law degree.

By then, Baum had already served two terms on the Dane County Board, from 1970-74. Her daughter, Dawn, was born in 1976, the year Baum became manager of United Neighborhood Centers. She was elected to the Madison school board from 1985-91, and she challenged incumbent Madison Mayor Joe Sensenbrenner in 1987, outpolling him in the primary but losing the general election by a margin of two-to-one.

Baum and her husband, George Swamp, were married in 1988. Their son, Jake, was born the following year. By now, Baum's opposition to covert U.S. military involvement in Central America had compelled her to lead the first of 10 fact-finding delegations to rural El Salvador, and to help establish the Madison-Arcatao Sister City Project.

Baum was rebuffed in her 1991 bid for a third school board term and a 1992 state Assembly campaign. Her path led away from electoral politics to enrollment in 1995 at Dubuque's Wartburg Theological Seminary. She was ordained in 2000.

Baum took the helm at Madison-area Urban Ministry in 1998, leading efforts to combat poverty and racism, foster healthy neighborhoods, promote affordable housing, help former prison inmates reintegrate into society and facilitate community conversations.

It was also during this time that Baum began to experience subtle changes in her health - little things she hadn't noticed before. Soon these would change the focus of her life of activism.

At first, they were the sorts of things everyone experiences at times. Struggling to find the right word. A train of thought jumping the rails.

But her symptoms grew worse. Baum would lose her balance, experience visual auras, drop things. She was irritable. There were mild tremors and sleep disturbances. In 2000, she consulted the neurologist who had treated her mother for Alzheimer's. A comprehensive examination - including an EEG that showed light seizure activity - led to a probable diagnosis of early-onset Alzheimer's.

By 2005, Baum was struggling to direct her staff and fulfill her other job obligations at Madison-area Urban Ministry. Resigning as director at the end of that year, she turned her attention to Alzheimer's - both as someone living with a probable diagnosis and as an advocate.

Within a year, Baum joined the board of directors for the Alzheimer's Association of South Central Wisconsin. She served on its public-policy committee and in 2006 traveled with Van Ryzin and the group's executive director, Paul Rusk, to Washington, D.C., to attend the national Alzheimer's Association Public Policy Forum.

As part of the conference, a candlelight vigil was held on the steps of the Lincoln Memorial. Baum, a featured speaker, made quite an impression. Rusk, a Dane County supervisor, is still moved by the memory.

The person who introduced Baum, he recalls, garbled the chapter's name. In a flash, she gently corrected him: South Central Wisconsin. With that, the audience was hers.

"There was a sense of, 'Good for you - you may have Alzheimer's, but you're able to process pretty quickly,'" says Rusk. He remembers that she revised her remarks right up until her address, as if preparing a church sermon. And as she spoke, "you had this tremendous sense of being proud and hopeful, and everyone is holding a candle, and the adrenaline rushes."

There was a great wave of applause at the end, and lots of picture-taking. "There's all these big chapters that have budgets four or five times ours," Rusk remembers thinking, "but we've got Mary Kay."

At the Washington forum, Baum and her sister connected with about a dozen others diagnosed with early-onset Alzheimer's, which accounts for about 10% of all Alzheimer's cases. It was the first time most of them had met someone else with this form of the disease.

"We found out that of the 12 of us, 11 either grew up or spent a large part of our youths on farms," says Baum. "These were farms with pesticides. At our farm, DDT was mixed right at the well." Along with genetics, environmental factors are among the leading strands of Alzheimer's research.

Though this "little caucus," as Baum calls it, was too small to be empirically significant, it led to a flurry of emails and phone calls. In response, the sisters launched forMemory, as both a nonprofit and a website.

forMemory.org invites people with Alzheimer's and related afflictions to identify helpful medications, herbs and oils. The goal is to create a matrix of information that points individuals with specific diagnoses to the most effective therapies.

Baum's own daily regimen includes prescription and over-the-counter medications, as well as dietaJoary supplements and herbs known or thought to improve brain function, boost the immune system and suppress dizziness, tremors and inflammation. She also seeks out soaps, shampoos and lotions containing lavender as a remedy for insomnia, anxiety and depression.

"Your skin," she says, "is a very good organ to take in medicinal things."

Baum and Van Ryzin have also put together a 42-page journal called Traveling with Hope. Published last March, it includes essays by the sisters and others affected by Alzheimer's. Says Baum, "It tells how we're surviving and how we're doing well."

Since 1971, Baum has been a member of the Rock Ridge Community, a Quaker-oriented residential co-op set on 200 acres of woodlands, wetlands, prairies and sandstone bluffs east of Dodgeville. She helped construct the earth homes that are built into the landscape here.

The structures are shaped like Quonset huts, their tops are covered in turf and native flora. From the back, Baum's home looks like a mound in the earth. The windows and glass front door face south, capturing sunlight. The cozy interior is naturally cool in summer and warmed in winter by a combination of passive solar heating, wood and electricity.

Baum and Swamp also keep a senior housing unit in Fitchburg, closer to his job as a social worker at Lincoln Elementary. Baum sometimes stays there overnight when she needs to be in Madison, but her home is Rock Ridge.

"This was always meant to be my retirement home and where I'd go on weekends," she says. But retirement came early, and not by choice.

Some retirement. Though she must ration her energy and pace herself, Baum keeps a busy schedule, sharing her experiences with small support groups and larger public forums.

Speaking at a Downtown Rotary meeting last August, Baum was engaging, direct and articulate. Decades of public service and ministry have trained her well for such occasions. Her eyes look up from her prepared remarks and roam the audience of several hundred people, drawing and fixing their attention. She appears to sometimes go off-script into extemporaneous remarks with a fluid ease that belies preconceptions regarding her disease.

Patiently defining terms such as "early onset," Baum recounts her family's history and describes her own journey, using both to illustrate the need to be alert to early symptoms.

The focus is on triumphs rather than adversity. Baum tells how, at one point, she was falling so much she could no longer hike in the southwest Wisconsin hills where she lives. The specialists she consulted prescribed medications and advised her to use a walking stick and avoid wearing bifocals.

"Now," she tells her audience, "I lead the DNR up and down the hills for hours, looking for our endangered species."

Baum once feared that losing some of her memory would make her less human. But, she says, there is something even more uniquely human than memory: the ability to envision a better world.

"That is the way we will ensure that those baby girls born in Wisconsin today do not experience dementia in their lifetime." Her remarks are met with a standing ovation.

Dan Smith, a veteran TV producer, was interviewing Baum for WISC-TV four years ago when he heard her use two words - Alzheimer's and hope - he never imagined together. He says the juxtaposition struck him with such force "I couldn't lose it."

Smith arranged another meeting and proposed following Baum with his cameras over an extended period of time, to document her experience. She agreed. The result is The Hope of Alzheimer's: An Advocate's Journey, an in-progress documentary and multimedia project. Smith has since left WISC to launch his own company, Triangle Media Works.

The film has grown to include Baum's sisters, especially Van Ryzin, because, says Smith, "that's what happened in the course of doing the story." Smith and his team accompanied the sisters on their trip to Indiana, where they had dinner with researcher Ghetti and toured his lab.

Smith's experience with Baum has changed his outlook on the disease, which claimed his stepfather and an in-law: "If I were to be diagnosed with early-onset Alzheimer's, I would say, 'Okay, what do I have to do to keep the bad things in check?'"

Smith hopes the documentary will find a home on public television or a network like Bravo late next year. He may also produce a feature-length version for the film-festival circuit or theatrical release in early 2011.

The film's website, hopeofalzheimers.com, contains clips of the documentary and a trailer that hails Baum and her sister as "pioneers" of a movement to change public perceptions of Alzheimer's. At one point, Baum expresses the movement's goals: "Replacing aloneness with hope, fear with knowledge, disease with life."

Baum is still an ordained Lutheran pastor, but no longer provides pastoral care. Her health, especially her emotional well-being, is too sensitive to endure the traumas of others. "It's too upsetting for me," she says.

George Swamp, Baum's husband, notes real improvement in her condition. Her speech, once slurred, is again clear. And if she is "not quite the same as the old Mary Kay" - able to multitask, impervious to commotion - "she works within limits, and is able to charge ahead."

But Baum must sometimes retreat. "I need a lot more silence than I ever realized before," she says. "People asking me questions when I'm tired feels like an assault."

In conversation, Baum sometimes gestures with her hands in ways suggesting mass and volume more than meaning or emphasis, as if she is shaping her ideas into a concise, coherent ball. On occasion, she closes her eyes as if to drop a curtain over anything that might distract her from what she wants to express.

Much of the time, she speaks with her eyes open - both to Alzheimer's, from which she refuses to shrink, and to the subjects she photographs. "A lot of what I do is to document rather rare things," she explains, "to be able to show them to others and explain their significance."

Scores of Baum's framed prints are stored in large plastic containers scattered about her living quarters. Most are floral: turtlehead, Culver's root, pickerelweed, obedient plant, an abundance of yellow lady's slippers from a visit to Washington Island. Using a macro lens from a low perspective gives her photographs a sense of portraiture, as if she is meeting flora at their level, face-to-face.

There are other subjects: a barn near Spring Green, in summer and again in winter; one of the ornate box turtles on the property ("I like his curious face," says Baum, noting that the Rock Ridge turtle colony includes a female estimated at 37 years old); a great bur oak that sank its roots here before European settlement, shown first in stark winter white, then full summer foliage; a marshy landscape from a visit to Menominee lands near Keshena.

Baum sells her framed prints for as little as $100, half of which covers the costs of printing and framing. The other half is a tax-deductible donation to forMemory. (To view samples of her photos and for information on purchasing prints, visit hopeofalzheimers.com.)

Baum agrees her symptoms have decreased and says there's been some improvement in her neuropsychological exams. Her sister's stabilization, she adds, has been even more dramatic. There were times when Van Ryzin would drive to a destination and not know where she was, or ask her husband the same question repeatedly throughout the day.

"Now she drives me to Chicago for conferences," Baum marvels, "and she does most of the planning for our activities with forMemory."

Claims of stabilization or improvement in Alzheimer's patients often meet with skepticism. "Sometimes we leave doctors' offices in tears because we feel like we haven't been heard," says Baum.

To convey her story and stay abreast of the latest research, Baum attends conferences geared toward physicians and other health-care professionals. She and her sisters are scheduled to be among the presenters at the state Alzheimer's conference next May in Wisconsin Dells, and they're planning a conference of their own in Appleton next fall. (Filmmaker Smith has promised the pair he'll "put something together for them" in time for this event.)

Rusk says Baum's contributions to his group, which recently changed its name to the Alzheimer's & Dementia Alliance of Wisconsin, are considerable.

"She brings to the board a key understanding of exactly what it means to have early-stage dementia," he notes. "There are not that many people in the country that are able to speak so eloquently about what they need." She proves "there is indeed action that you can take to enhance the quality of your life."

Baum agrees: "How can I not feel good about life and feel like I have a purpose, when I'm helping everybody by drawing these connections?"

Alzheimer's research marches on

It's been a century since German psychiatrist Alois Alzheimer gave this progressive neurodegenerative disease his name, after studying the brain tissue of a 51-year-old woman who had died of presenile dementia.

Only in the last 30 years have the most significant strides in Alzheimer's research been made. The leading cause of dementia, Alzheimer's appears to stem from some combination of genetic, environmental and other factors acting over an extended time.

An autopsy involving study of the deceased's brain tissue remains the only definitive diagnosis. Until then, diagnoses are classified as probable or possible.

The disease's complexities boggle even healthy minds. In the simplest terms, it involves abnormal deposits, called plaques and tangles, that disrupt, damage and kill nerve cells, leading to declines in cognitive function. Symptoms include difficulty remembering names and recent events, confusion, behavioral changes, impaired judgment, dizziness and tremors.

Alzheimer's research has produced a handful of drug therapies that help manage some behavioral, speaking and memory problems. More potential Alzheimer's drugs are in FDA trials. Recent research suggests early diagnosis and treatment can prolong function for months or years, as may lifestyle habits including good nutrition, mental and physical training, and social engagement.

Baum up-close

An exhibit of Mary Kay Baum's photos is scheduled for Jan. 15-April 9 at the Evangelical Lutheran Church of America's South Central Synod of Wisconsin office, 2909 Landmark Place, Suite 202.

A reception for Baum, during which she will speak and sign copies of Traveling with Hope, is scheduled for 1 pm Thursday, Feb. 18, after the synod's noon Lenten services and bag lunch.

And Baum will display her photographs, speak, sign copies of Traveling with Hope and introduce a six-minute clip from the Hope of Alzheimer's documentary during a reception 6-8 pm Thursday, Feb. 4, at the Willy Street Co-op.