‘It’s not an easy journey’: Woman diagnosed with early-onset Alzheimer’s strives for positive life
Victoria Bayle is a loving wife and mother of three who just celebrated her 49th birthday. She’s a big Penn State fan who enjoys traveling, but one of her favorite pastimes is cooking and baking. A few years ago, when she couldn’t find her cooking utensils and dishes in the kitchen, Bayle started to connect the dots.
“I have lived in the same town of Edinboro for, gosh…longer than my husband and I have been married. I was driving through town one day, and all of a sudden, I didn’t know where I was…44-45 years old is when I started to notice the changes,” Bayle said.
She underwent basic cognitive testing and a neuropsychiatric evaluation, which ultimately led to a spinal puncture and second opinion from a neurologist and close family friend.
“It was all over her face. Again, we’re very good friends. And she said, ‘I’m sorry…you have Alzheimer’s.’ She actually was crying,” Bayle said.
It was an early onset Alzheimer’s diagnosis came in her mid-40s, a shock to everyone around her.
“My husband, who is retired military, retired Pennsylvania state trooper, I mean, this man is a rock…he was crying,” Bayle said. “I’m rubbing the both of their backs, I’m like, ‘it’s fine! We’re going to fight this, everything is okay.’
That positive attitude is a testament to how Bayle’s journey began. She has raised thousands of dollars for the Alzheimer’s Association, eventually serving on the board of the Greater Pennsylvania chapter. Bayle recently traveled to Washington D.C., lobbying at the nation’s capital for more research and funding. She decided to drastically improve her diet, incorporate weight training into her walking routine, and try several different treatment options.
“We have entered the era of treatment. We’re not yet to a cure. Do I feel like it’s coming? Absolutely,” Bayle said. “You can’t change what’s happened, but what you can do is make your lifestyle changes to do the best things for your body and mind.”
We spoke with Dr. Riddhi Patira, a neurologist who says early detection is key. While Bayle is not her patient, Dr. Patira applauds the decision to be your own advocate.
“We want to make a diagnosis, and we want to start treatment because there are therapies that are emerging, and if someone is a candidate, it’s time sensitive,’ said Dr. Patira, an assistant professor of neurology at UPMC.
Right now, Bayle is trying to get Leqembi, a newly-approved FDA infusion treatment. She doesn’t believe her private insurance will cover it, and right now, it costs thousands of dollars
“CMS approved it, which is Medicare for folks who are on disability, which I am, but I haven’t been disabled long enough to get that,’ Bayle said.
“it’s early. We don’t know how effective these medications are, and we don’t know the long term outcomes as well, but it’s raising hopes that at least some things are making advances,” Patira said. “The treatments approved are IV antibodies, which removes the protein Amyloid, which is the hallmark of Alzheimer’s, and it’s only approved for early stages.”
In for the fight of her life, Bayle is embracing all that life has to offer.
“For each step forward, there’s another step back, but that’s still not stopping me from trying to keep the positive attitude,” Bayle said. “I think that when you are faced with knowing time is limited, you really just learn to appreciate and live it up.”
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