By Esther Talbot Fenning
SPECIAL TO THE POST-DISPATCH
Charles Schneider realized he had a problem when it became an effortto flick a light switch. At the time Schneider was a firefighter with the Ferguson city fire district. He couldn't remember the combination to his locker, the location of his tools or his home telephone number.
When his wife's name escaped him, he went for help. That was three years ago. Schneider was 51 years old. The diagnosis was early-onset Alzheimer's disease.
Unlike most Alzheimer's patients, Schneider didn't suffer the agonizing depression that he said usually lasted a year. He attributed his positive attitude to his longtime career as a police officer and firefighter.
"While I certainly didn't like it, I was accustomed to dealing with bad news, injury and death, and I believe that prepared me to handle it," he said.
Almost immediately, Schneider got busy. He wrote a book titled "Don't Bury Me" that gives the upside of early diagnosis. He started a support group. He serves as a private investigator for nonprofit organizations, and he and his wife, Barbara, go on short mission trips for their church.
Above all he acts as a spokesman for the Alzheimer's Association. He is a member of DASNI (Dementia Advocacy and Support Network International) and one of nine people across the country with early-onset Alzheimer's to sit on the Alzheimer's Association Advisory Group of People with Dementia. The group meets periodically - sometimes by conference call - with a task force of health care professionals involved in the diagnosis and treatment of Alzheimer's patients.
The youngest member of the group with early-onset Alzheimer's is 29 years old, Schneider said. He explained that there are 70 to 80 forms of dementia - including Alzheimer's - all of which eat away at the memory in different ways. He added that Alzheimer's was striking people at younger ages and that new diagnostic tests that included a spinal tap were 98 percent conclusive in detecting early-onset Alzheimer's.
Schneider's doctor ordered the test for him.
"I had a great doctor who was on top of it, but he is the exception to the rule," Schneider said. "Most young people aren't treated for years. Doctors tell them they're depressed and send them away.
"It's sad because there are so many new medicines that can help with early treatment and diagnosis."
Schneider, 54, grew up in Florissant, where his father, Charles Schneider, served as St. Louis County assessor. Schneider Sr. died at 57 of a heart attack. His son is convinced that he had Alzheimer's. Schneider's mother, Ruth Oster, remarried at 73 and lives in Florissant.
Schneider and his wife live in O'Fallon and have two grown children and five grandchildren. Schneider explained that early-onset Alzheimer's is more of a genetic disease than the type that strikes after age 65.
He noted that the disease is almost more difficult for the family and caretakers than for those who are afflicted. His wife wrote the last chapter in "Don't Bury Me." She was devastated and went through a period of anger and depression, Schneider said.
"She came around to where she deals with it just fine," he said. "It helps that we both have a strong Christian faith."
Schneider's support group includes caretakers, who separate for their own meetings. Schneider's wife told him that they sometimes discuss the stress of grieving the loss of loved ones while they're alive.
"It's hard on the spouse to have you there in body but not be the person they've known for all those years," he said. "They grieve as they witness your decline and again when you die."
Schneider likened Alzheimer's to being brain weary and dazed.
"Some of us call it a cloud over the brain," he said. "The simplest things take extreme effort."
"But it's like anything else. If you lose a leg, you eventually accept it and get used to doing things without it. Those with Alzheimer's must empower themselves - by writing notes, for instance. We keep Post-It in business."
Schneider described the Alzheimer's Association of St. Louis as "one of the biggest and best-run organizations in the country." He is motivated to speak out because he said that for every person who sought help from the Alzheimer's Association there were hundreds who suffered alone. He hopes to get the word out to those people and prompt physicians to diagnose earlier. He calls it a rescue mission.
"Some in our group were diagnosed eight years ago," he said. "Because of new medicines, they work the Internet, give speeches and live fairly normal lives."