ROSENDALE — A former attorney and ordained ELCA Lutheran pastor, Mary Kay Baum, retired at age 57 when she was diagnosed with early onset of cognitive problems attributed to Alzheimer’s disease and vascular dementia. She spoke about her experiences during an Oct. 6 presentation called the “Art of Living with Alzheimer’s” at the Rosendale Community Center.
The subtle signs of cognitive problems began in her late 50s. Baum fell often and experienced tremors and vertigo. Her neurologist found a lesion on the front side of her brain, close to the language lobe and an EEG depicted seizure activity in the same area of her brain, near to the lesion. Her doctor tested her for Alzheimer’s disease.
The Wisconsin Alzheimer’s Institute estimates that one in three families in Wisconsin is affected by someone with dementia.
While there are many causes of dementia, Alzheimer’s disease is the most common, often coupled with other neurological issues. People like Baum, with early onset Alzheimer’s, show dementia symptoms before age 65.
Illness runs in the family
Cognitive challenges related to Alzheimer’s run in Baum’s family. Her mother and her aunt suffered from growing mental confusion in their 50s. Autopsies revealed that each had Alzheimer’s disease. Baum and her two sisters, Chris Van Ryzin and Rosann Milius, all have early onset Alzheimer’s disease. The three sisters know first-hand the fear of dementia, yet refuse to accept their diagnosis as a “death sentence.” Baum believes things can be done in the early stages, and she is committed to bringing a message of hope to others.
She is the board secretary of the Alzheimer’s and Dementia Alliance of Wisconsin and co-founder of forMemory, Inc., a network of people affected directly or indirectly by early onset cognitive challenges. They enjoy a spirit of camaraderie with others who have similar challenges and replace silence with hope through public outreach in the community.
Hiking, photography are healing
Baum, who grew up on a 100-acre farm north of Appleton, lives with her husband George Swamp in rural Dodgeville, where she enjoys hiking and nature photography. Although some might not immediately associate exercise with cognitive abilities, Baum said, “Walking itself is a cognitive act,” adding, “The more I hike, the more I find my words.”
Mary Kay Baum and eight
Follow Baum’s journey of hope and view photography at www.hopeofalzheimers.com.
Baum shares her message of hope to other people affected by cognitive challenges through photography. Her nature and farm photography was displayed at the presentation. Purchases benefit forMemory, Inc. Baum loans her framed photos to assisted living communities and sometimes leads discussions with residents about her farm photos. The images bring back memories for many of them and establish connections. Baum finds sharing nature with others to be healing.
With a civic and social justice background, Baum once found it easy to engage in public speaking and debating, following multiple conversations at once and not feeling overwhelmed with the stimulation. She was a court administrator, director of Madison-area Urban Ministry, on the County Board of Supervisors (1970-1974), on the Madison Metropolitan Board of Education (1985-1991), and she was a City of Madison mayoral candidate in 1987.
Seeing her many past professions as stepping stones to her work today, Baum believes, “I am called to do my most important work now, what I most uniquely [am] prepared to do, and that is, to urge people to get help early and proactively.”
Watch for subtle changes
Baum says the key to determining early onset cognitive problems is to observe subtle changes and compare these with one’s previous condition. People should seek help early for sleep issues, falling, clumsiness, weakness, irritability, silent seizures or any neurological change.
“It’s different for everybody and it’s compared to what you were before,” said Baum.
For example, it doesn’t take much stimulation for Baum to feel overwhelmed and on sensory overload. But never before was such stimulation or commotion a problem; she performed well in such situations. At work, Baum used to handle stress well and calm others’ nerves, but now she was coming home with a sustained feeling of irritability that wouldn’t go away. She recommends getting a second opinion by asking a spouse or friends if they perceive changes.
Environmental toxins, poisons are contributing factors
Those who are at risk for developing dementia have it in their family and oftentimes have been exposed to environmental toxins and poisons. The Wisconsin Alzheimer’s Institute reports that having a mother with Alzheimer’s disease puts one at significantly greater risk than having a father with Alzheimer’s disease. In people with neurological diseases, Baum explained, the blood brain barrier has been compromised, which allows harmful substances to pass into the brain. This is one reason her symptoms increase with exposure to chemical bleach. Baum mentioned that soldiers returning from Iraq and Afghanistan have higher incidences of both seizure activity and dementia.
On the dairy farm where Baum grew up, the pesticide DDT was used extensively in the area, while paper mills of the Fox Valley spewed pollutants into the air. The first time Baum met with a group of others diagnosed with early onset Alzheimer’s disease, she discovered that out of their group of 12 people, 11 had been farmers or spent “a significant part of their life on the farm.” The 12th person had not, but lived in St. Louis next to a hazardous waste site where they had produced Agent Orange. Such discoveries point to the connection between a healthy environment and a healthy mind.
Coping strategies include good nutrition
The art of living with such challenges is also different for every person, said Baum, but it involves similar coping strategies. Baum advocated healthy living habits, such as adequate rest and proper nutrition, “to eat more like our grandparents did,” she said. She encourages people to eat foods rich in omega-3 fatty acids (green vegetables and fish oil), to add anti-inflammatory spices and herbs, and to lower the amount of grains (omega-6s) in their diets.
“Exercise, physical activity, is so helpful,” said Baum.
When she couldn’t walk, balance therapy, ankle-strengthening therapy and medication enabled her to regain her ability to hike the hills without fear of falling.
People with early onset Alzheimer’s often show a decreased interest in attending social activities. Baum encouraged her audience to stay active socially and intellectually by pursuing hobbies and enjoyable activities. To avoid fatigue and stress, Baum paces herself, for example, never agreeing to give more than one presentation a day.
Family focus of upcoming documentary
The more Baum learned about and experienced of Alzheimer’s, the more she became convinced that treatments must be “whole body, whole family, whole community and whole earth.”
“What I can do is to tell my story,” said Baum.
A documentary on the Baum family is currently being produced and will be aired on Wisconsin public television next year.