Surviving with Alzheimer's Green Bay Press Gazette - Green Bay, Wis.
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She's going for the record.
It's been 20 years since Chris Baum VanRyzin's symptoms started in 1989. Now at 60, she wants to be the longest functionally-living person with probable Alzheimer's disease.
"That should be a term for survivor," said the Appleton resident. "If you are better now than you were before."
VanRyzin, of Appleton, will reveal her first-hand experiences during a presentation called "Traveling With Hope: Sharing our Life With Memory Challenges" at 2 p.m. Wednesday in the Kresge Center at Bellin Health Hospital, 744 S. Webster Ave., Green Bay.
It's part of a two-month tour across the state to promote Alzheimer's awareness and is intended to give information on understanding Alzheimer's and reducing the severity of the disease.
The progressive and fatal brain disease is the seventh-leading cause of death in the United States, according to a 2009 Alzheimer's Association report. The likelihood of developing Alzheimer's doubles every five years after a person turns 65. "Very simply, the brain is in a dying process," said Jean Howard, community liaison director at the assisted living facility Harbor House in Green Bay, who helped organize the event. "Everyone should be educated about the disease so they know what's happening."
VanRyzin suffered early symptoms, including tremors in her hands. She also would forget small things. "You can hide it for a while," she said.
If she couldn't remember a word she'd come up with another. She would use cues and take a lot of notes. Then the problems got bigger.
"I would work with a customer, go find an answer, and forget what I was doing," she said of her job at Galaxy Science and Hobby Center, a hobby store in Appleton. "I forgot the date we were suppose to attend a friend's birthday party."
Besides memory loss, VanRyzin says a big part of the disease is cognitive. "It's not always information that is gone, but the process to get information."
For example, she would see her empty tank light turn on, recognize it but not know that she should get gas. It can take a few minutes, hours, or even days for her to come up with the answer to a question. When she gives her daughter the answer, they have to recall the question. "It's like a game," she said. Her mother and aunt both died of Alzheimer's.
VanRyzin has been able to manage her symptoms by reducing stress, avoiding toxins in her food and environment and receiving support from family and friends. But she has suffered some memory loss.
"I did have moments when I would look at my husband and not know in my brain who he was, but could only feel in my heart who he was."
She compares it to a movie after taking a few minutes to remember it: "50 First Dates," in which a woman has no short-term memory. "He'll bring up events and I'll say 'I don't remember that,'" she said about her husband. "There are years that are missing. But the emotion is still there, and I trust that."
Candace Pert is an Alzheimer's disease expert who wrote the book "Molecules of Emotion" and she is the chief scientific officer of RAPID Laboratories, a drug research and development company in Maryland. New data shows people are constantly making new cells that move from the body to the brain, Pert said.
"You know how they used to think the sun revolved around the earth?" she said, explaining that the same nerves in the brain are also in the heart and spinal cord. "Emotions run every system in your body. It's not just psychological."
VanRyzin has researched studies and reports on Alzheimer's since suffering the early symptoms of the disease, said her 61-year-old sister Mary Kay Baum of Dodgeville. "She's my heroine," Baum said. Baum was diagnosed as Alzheimer's probable in 2005. The chances of having the disease increase if your mother suffered from it. "I didn't have the level of fear I would have had if my sister hadn't paved the way," Baum said about her sister.
Baum, a self-described activist, ran for mayor of Madison in 1987. "I enjoyed intellectual challenges. Now I have to pace myself." She said she plans to keep Alzheimer's from progressing, but points out that many consider it a death sentence.
Since the diagnosis, VanRyzin wrote "Alzheimer's Averted," co-edited "Traveling With Hope" with her sister and a documentary following both is set to release in spring 2010. They even started forMemory, a nonprofit based in Appleton designed to connect people with probable Alzheimer's as a way to provide them a support system.
As for breaking the record, VanRyzin doesn't know who the current holder is.
"I may be the one setting the record. That would be cool."
If you go
Chris Baum VanRyzin will present "Traveling With Hope: Sharing our Life With Memory Challenges" at 2 p.m. Wednesday in the Kresge Center at Bellin Health Hospital, 744 S. Webster Ave., Green Bay. The presentation is free, open to the public and offers continued education units for anyone in the health-care field.
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