Because her mother, grandmother, aunt, uncle and great aunt had early-onset familial Alzheimer's disease, all in their 40s or early 50s, Ashlander Kate Preskenis has a 50-50 chance of getting it.
That "terrifying" fact prompted the 37-year-old to write a book called "The Gene Guillotine," the title of which describes what it feels like for Preskenis to have the spectre of such a cruel diagnosis hanging over her head.
She could get a gene test and find out whether she's free of the curse or condemned to a decade of dementia and certain early death, but she considers that a "lady or the tiger" choice, an allegory used to describe a problem that is unsolvable.
"I could get a genetic test, but if I have the gene from my mother," she says, "how do I go on with my life knowing I've plateaued and am about to start going downhill?
"Then again, I might not have it. The sliver of hope that I don't have the dreaded gene seems more important than finding out definitively, which grants hope or seals hope away."
This seemingly no-win bind has been the end of some of her relationships, and she has decided she won't marry or have children. She chose to be a waitress instead of pursuing careers with her degree in environmental studies, sociology and government from St. Lawrence University.
"In the past, I chose not to get married. My father died as my mother's caregiver, and I felt like his death was a direct result of caregiver stress due to Mom's illness.
"If I'm going to die, I don't want to bring someone else down with me. I've chosen not to have children or a serious career," says Preskenis, who has shown no clinical symptoms of Alzheimer's. "It's drastically affected my life already. It was very hard on me when mom got sick."
Early onset accounts for about 5 percent of Alzheimer's cases, and only 1 percent is inherited, says Preskenis, who is in a CNN documentary about the subject called "Filling the Blank." This population, being young, is intensely studied in drug and other tests, she says.
If one parent has the gene, you have a 50-50 chance of inheriting that gene, and if you do, she says, "it is deterministic — the research doctors say you will get it." All the attention on the disease — and her painful exposure to it over the generations — has led to a situation where she gets a bit "panicky" if she forgets a name or appointment.
In her 306-page memoir, (Present Essence Publishers, 2012) Preskenis recounts how her mother had to watch her own mother suffer in a fetal position, full of IVs and feeding tubes — which resulted in Kate's mother writing a living will and stating that she didn't want to be fed if she couldn't feed herself.
On the KickStarter "crowd-funding" website, Preskenis sought $7,800 to finish, edit, and do layout and marketing on her book. She received $9,800 in January 2011. The book is on Amazon.com and at Barnes & Noble for $14.95 and has gotten 12 five-star reviews so far.
One reviewer, Kenneth S. Kosik, co-director of the Neuroscience Research Institute at the University of California at Santa Barbara and author of "The Alzheimer's Solution," calls her book "without a doubt the most moving account of Alzheimer's disease yet written."
The book tells the grinding tale of her mother's first symptoms, when Kate was just out of high school, asking three times in an hour about the message on her T-shirt. "I saw the subtle changes in her," says Preskenis. "She stopped cooking and doing laundry around age 48 and started smoking. She got forgetful and moody. We were like siblings fighting. I was so confused. She didn't want to admit what was happening."
Even if Kate doesn't have it, it's still a "scary" future, she says, with the potential of watching family members get the disease.
Having forgone a normal life, career and family, Preskenis says the presence of the gene guillotine "is terrifying. How do I set my life up? Do I start now to say goodbye to people? I think of people with cancer having nine months or so to live, but it's different losing your mind. At the end of the long disease, the brain has atrophied, and it is unlikely you will be able to tell people you love them."
So, in the world of early onset, what is Kate's life and focus?
She loves being a waitress, hiking in the hills, doing qigong and, a lifelong love, writing. She has her eye on writing more books, she says.
Until being sidelined by a back injury, Kate loved Ecstatic Dance on Sunday mornings in Ashland. "My life is about living in the present. When I danced, I was the one with my hair flying all over. People said I was the most energetic dancer they ever saw."
John Darling is a freelance writer living in Ashland. Email him at email@example.com.