One of the first signs of trouble came two years ago as Vickie Bayle was driving with her youngest daughter through downtown Edinboro.
Though the 47-year-old had traveled along Route 99 countless times since moving to nearby Washington Township, Bayle suddenly realized she had no idea where she was going.
“I was driving to see the eye doctor,” Bayle said. “When I reached the stop sign on a road that I drive every day, I had to ask, ‘Where are we going?’ My daughter said, ‘To the eye doctor.’ And I had to ask her where that was.”
Bayle quickly regained her sense of direction and memory, but the moment stayed with her. A short time later, Bayle was preparing Thanksgiving dinner at home when she couldn’t recall where she kept her cooking utensils, items she used almost every day.
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As these events became more common, Bayle sought medical treatment. She was diagnosed in December 2021 with Alzheimer’s disease, a type of dementia that is most often found in people 80 and older.
Only 5% to 6% of all people with Alzheimer’s were diagnosed before they were 65, according to Mayo Clinic.
“Vickie is the only patient I see with Alzheimer’s who is in their 40s,” said Dr. Katie Warren, a Meadville Medical Center neurologist who treats Bayle. “It’s very rare for someone that young.”
Warren not only treats Bayle for her Alzheimer’s, she also is her neighbor and friend. Bayle sought her out when she experienced her first symptoms.
After extensive testing, it was Warren who arrived at Bayle’s home a year ago to tell her that she did, indeed, have the incurable disease. Bayle knew the news wasn’t good when Warren called and asked if Bayle’s husband, Erie County Councilman Samuel “Charlie” Bayle, was home.
“At one point we’re all sitting at the kitchen table and both Katie and my husband are getting emotional,” Bayle said. “I’m rubbing their backs and saying, ‘Everything is fine.'”
There is no cure for Alzheimer’s disease, Warren said, and the medications used to slow its progress work for a matter of months to years, not years to decades.
Newer medicines have been shown in clinical studies to slow the progress a bit more, but come with a risk of brain swelling and microscopic brain bleeds.
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“We no longer are able to provide these newer medications to our patients,” Warren said. “There may be some improvement in some patients, but there are also some risks.”
Bayle takes the older Alzheimer’s medications and tries living a healthy life to keep her brain functioning as well as it can.
She exercises regularly, usually long walks around her neighborhood. She also eats a healthy, well-balanced diet.
“Eating has been a bit of a challenge, though, because I’m not hungry much anymore,” Bayle said. “And I have always loved good food.”
A depressed appetite is common among people with Alzheimer’s for several reasons, including medication side effects and a decreased sense of taste and smell, according to the Alzheimer’s Association.
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Bayle, a former Erie Catholic Schools teacher who works for Erie Insurance, continues to live an independent life. She works full-time and still performs daily activities like driving and shopping on her own.
She uses two smartphones and a pile of sticky notes to organize her day.
“I’ll use one phone to text the other with a list of things I need to do,” Bayle said. “I have to do it right away or I will forget.”
Bayle’s symptoms are progressing, both she and Warren said. Like many Alzheimer’s patients, Bayle said she has “good brain days and bad ones.”
She asked Warren for a long-term prognosis. After some hesitation, Warren told Bayle she could expect to live with the disease for about 10 years.
“I felt obligated to give her some idea, but you really don’t know,” Warren said. “It could be five years, it could be 20.”
Knowing that Alzheimer’s will likely shorten her lifespan, Bayle said she is determined to create memories for herself and her family.
That includes small events, like baking cookies at home with her three children, and larger ones like vacation trips.
“We went to Universal Studios in Orlando because my husband knows how much I love ‘Harry Potter,’ and I got to live out my ‘Harry Potter’ dream,” Bayle said. “We went to the Florida Keys, and we have the opportunity to go to Colorado soon.”
Bayle, who described herself as “annoyingly positive,” said she doesn’t question why she has to deal with Alzheimer’s. As her disease advances, she knows what to expect over the next several years.
But it’s not going to be her main focus in life.
“I know what will happen. I know that I will decline,” Bayle said. “My message is that you shouldn’t be defined by that. Don’t live there. There is too much life to live.”