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It
started, as it so often does, with unusual behavior. Kris Bakowski
went to her doctor complaining of memory problems, which seemed
to be getting worse, and scarier, as time passed. She went through
six months of medical investigation - MRIs, cat scans, spinal taps,
neurological rundowns, psychological evaluations, dozens of blood
tests - before it was finally determined that she had Alzheimer's
disease.
What was less typical in Kris's experience was
her age. She was 46.
"I was young and Alzheimer's wasn't the first
thought. After I was diagnosed, I certainly wasn't happy with the
news," said Kris. "But at least I knew what I was dealing with."
Kris was right in the middle of a very full life.
She was the director of the 2,000-seat Classic Center, a performing
arts center in her hometown of Athens, Georgia. Her son was in college.
Her husband was busy with his work.
After she was diagnosed, Kris was immediately
fired from her job. She went through more than a year of legal wrangling
to get it back. In her social life, people she used to call friends
suddenly stepped away. After four tries, and with an upcoming hearing
in court, she continues to be denied disability from Social Security.
"My husband likened it to the Titanic. He felt
like I was sinking and I wasn't going to survive, but he and my
son were," said Kris, recalling her family's initial reaction to
her plight. "My son likened it to me sitting on death row but being
innocent."
Today, Kris has both good and bad days. Now retired,
she tries to stick to a routine. She starts her day with a workout
at her gym, less than two miles from her home. A good day is when
she gets there and remembers why. A bad day is making a wrong turn
and panicking.
"If I start out like that in the morning, I know I just have to stay home all day," she said.
Kris has made an effort to speak out about the
disease and raise awareness. At last year's Public Policy Forum,
she spoke about employment issues for people with Alzheimer's. She
continues to talk about the lack of a good diagnostic tool for detecting
the disease, which stops a lot of people from getting the help they
need.
"Most [people with] Alzheimer's who are older
can't talk for themselves. I feel like I need to talk as much as
I can, for as long as I can," said Kris. "The only way we're going
to get more money for research and to help [those with the disease]
is to make people aware."
Kris's family have all worried about the hereditary
nature of Alzheimer's.
"I don't know if there will be a cure for me in
my lifetime," said Kris. "But I am working now as hard as I can
to help, because if my son gets afflicted, I want there to be a
cure for him."
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