Lauralee Denler, 60, goes for a run on her long, winding driveway in Old Saybrook to train for a 5K. Her wife Tara Milardo runs with her, cheering her on.
A year ago, Denler was diagnosed with young onset Alzheimer’s, a term used by physicians when the disease is diagnosed under the age of 65.
“I was working in school, I was teaching small group instructions for reading and math students, and I realized that I couldn't remember their names,” Denler said. “I also would walk down the hallways and look at the teachers, and I couldn't recall who they were. So, I went to my primary physician. They ended up taking a test. And when it came to the word recall, I couldn't recall one word, and I just started crying.”
Denler’s doctor got her into an Alzheimer’s clinical trial in Stamford right away – her mother, too, had the disease. And she believes that the experimental drug she takes twice daily is unlikely to be a placebo.
“[My mother] didn’t have any of these studies. That's why I'm so grateful to be in a study. I'm already noticing the differences,” Denler said. “My total recall is there again, word recognition is back up. When I first went there, and they would put the camera on you and interview you, I remember I had a blank stare outside the window, and they asked me where I was and I didn't know where I was. Now I can give you the address, I can tell you the town, I can tell you the people there.”
That sense of wellbeing allows Denler to live an active life. Studies have shown that patients who stick to a healthy diet and keep moving do better.
The Alzheimer’s Association of Connecticut is hearing more from patients under the age of 65.
Kristen Cusato, spokesperson, says the number of people,including Denler, showing up at museum tours, aquariums and picnics for Alzheimer’s patients has doubled since last year.
“There is less of a stigma and people are not as afraid to come forward,” Cusato said. “Doctors are seeing that 40-and-50-year-olds can have this disease. Previously, and we heard a lot of stories of people saying, ‘I go to the doctor, I was having memory concerns, we were fighting a lot, and the doctor would say, go to a marriage therapist.’”
Dr. Carolyn Fredericks, a Yale neurologist, says much of that change in mindset is driven by science.
“With new treatments on the horizon, including what we call disease modifying therapies, amyloid antibodies, for example, more people are coming forward with symptoms that they're concerned about than might have in the past,” Fredericks said.
Around 300,000 people live with young onset Alzheimer’s in the U.S., according to the Alzheimer’s Association. A state-by-state breakdown does not exist. But a quarter of all patients at the Connecticut support group Giving Alzheimer’s Purpose include people with young onset. The Connecticut chapter is launching its first support group exclusively for patients living with early onset.
At Denler’s picturesque New England house in Old Saybrook, her family is more active than ever. Denler and Milardo’s son Tyler, who they adopted from Guatemala when he was a baby, is now 21 and a runner who makes sure that Denler keeps moving.
“Even if it’s not going on a run, maybe it’s just a walk down the beach,” he said.
Out on the back porch, the Connecticut River is silver and gray in the afternoon light. Sounds of summer are everywhere, wind rustling through full branches, bird calls. A lighthouse rises from a rock, surrounded by sailboats.
Exhausted by her disease, Denler no longer works full time, just a few hours a week. Milardo’s insurance from her corporate job covers her medical care.
Denler meditates in her garden, attends sound healing therapy and cooks brain-healthy food.
‘The junk food is Tyler’s,” she laughs, opening her pantry. “Let’s see, one of the first things I take in the morning is this organic MCT oil. I put it in my yogurt. I can put it in my oatmeal.”
She shows a cookbook titled, "MIND Diet for Beginners." “It has 85 recipes and a seven day kickstart plan to boost your brain health,” she says. Black bean burger is a favorite, as is a cashew veggie stir fry.
It’s inevitable that Denler often thinks of her mother. “She would wander a lot. Then we would lose her. We would actually have to call the constables to help us find her [and] they would always bring her back,” she says. “She went into different moods. My dad did not want to put her into any type of another living arrangement. He thought family would be able to take care of her, and we did. It was Tara, myself and my dad who pulled together and took care of my mom. But I'm not there yet to put myself at that ending point, my ending is a lot different.”
Denler pulls out her vision board stuck with collages she made of her future.
“These white flowers represent hope in Alzheimer’s,” she said. “That’s Snoopy holding up a white flower. After I’m healed I want to go to Switzerland.”
And there, she dreams of being among the edelweiss.
