Apr. 25--Three brothers. Three funerals. Four short years.
Phillip Walter died at 62. Michael Walter died at 59. Steven Walter was 57.
The cause was a rare, mysterious neurological illness that first robbed them of their personalities, and then everything else.
While they were living and even in death, the Walter brothers contributed to the understanding of frontotemporal dementia. They subjected themselves to tests at the National Institutes of Health in Maryland, took part in research at the University of California, San Francisco, and even agreed to allow autopsies of their brain tissue after they died.
Now Michael's widow, Beth, is working to carry on their mission.
Beth Walter, who lives in Cameron Park, is using her family's story to educate the public and raise funds for research on FTD.
"The most important thing is creating awareness," said Walter, who works in real estate development and chairs the Rancho Cordova Chamber of Commerce. "This isn't AIDS or cancer. Very few people know about this disease. There are no movie stars associated with it.
"Michael and his brothers took a very difficult situation and turned it into something positive for others. I want to continue to do that."
Walter has started by organizing the first Quest for the Cure golf tournament, on April 28 at Catta Verdera Country Club in Lincoln. Proceeds will benefit the Association for Frontotemporal Dementias, a national nonprofit group created in 2002 to help people who live with FTD.
Frontotemporal dementia, also known as Pick's disease, affects an estimated 10 of every 100,000 people. FTD causes a progressive decline in social skills, intellect, memory and language, according to the association, and many patients develop neurological symptoms that lead to their deaths. The disease, often mistaken for Alzheimer's in its early stages, usually strikes people in their 50s and has no effective treatment or cure.
Phillip Walter, who lived in Baltimore, was the first of the three brothers to develop symptoms. Relatives now suspect that their late mother and aunt may have had FTD as well.
Between 17 percent and 50 percent of FTD patients have a family history of the disease, according to researchers at the National Institute of Neurological Disorders and Stroke. The illness causes a shrinking of certain portions of the brain, and an autopsy is the only way to absolutely confirm the diagnosis.
Michael Walter's symptoms were subtle at first, said his wife of three decades.
"It was just little things he said and did," Beth Walter said. "He had always been very conscientious, and that started to change."
A successful salesman, he no longer seemed to care about his business customers. "He made poor decisions," Beth Walter said. "His reasoning no longer was sound." He started collecting odd items, such as antique pickle casters. He became a dangerous driver and developed strange eating habits.
Alarmed, Beth Walter got on the Internet and learned about FTD for the first time. The constellation of symptoms fit Phillip and Michael "to a T," she said.
By 2002, all three brothers were enrolled in research at NIH and at UCSF's Memory and Aging Center, where they submitted to regular testing and checkups. Within two years, Phillip Walter was dead and his two brothers, who lived across the country in the Sacramento area, were losing their personalities and mobility to FTD.
"They were determined to be part of this research, even though it didn't offer any hope of a cure for them," Beth Walter said. "It was difficult, but it was very important to all of them."
FTD is linked to one and possibly more genetic mutations, which scientists are studying with the help of families like the Walters, said National Institutes of Health clinical investigator Edward Huey.
"We're just starting to get a sense of the prevalence of FTD" and the genetic flaws that may be linked to it, Huey said. "Families like these are crucial to those studies."
Michael Walter participated in the research until shortly before his death in August 2006. So did his brother Steven, who died about eight months after Michael.
Their families are left with a daunting legacy. Although doctors say the chances of the brothers passing FTD onto their children are probably remote, "of course we think about it and worry about it," said Beth Walter, who had two sons, now adults, with Michael.
"But you can't let it consume you, she said. "The best thing we can do is take everything that we have learned from our experience and use it to help someone else, and to take the time to remember the ones we've lost. If you don't do that, then it's all a waste."
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For more information about frontotemporal dementia or Pick's disease, go to www.ftd-picks.org/" target"_blank"http://www.ftd-picks.org/
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