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Charles Schneider
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People with Alzheimer's can be productive,
man shows: NEIGHBORS CHARLES SCHNEIDER
By Esther Talbot Fenning
SPECIAL TO THE POST-DISPATCH
03/27/2006
Charles Schneider realized he had a problem when it became an effort
to 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."
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