|
Being young with Alzheimer's
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 Bakowski'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 Bakowski. "But at least I knew what I was dealing with."
Bakowski 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, Bakowski 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 Bakowski, recalling her family's initial reaction to her plight. "My son likened it to me sitting on death row but being innocent."
Today, Bakowski 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.
Bakowski 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 Bakowski. "The only way we're going to get more money for research and to help [those with the disease] is to make people aware."
Bakowski'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 Bakowski. "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."
|
