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the experience: living with early stage alzheimer's

Jay Smith's Story

Jay Smith, an accomplished architect from Los Angeles, was diagnosed with Alzheimer’s disease at the age of 66. Smith is the new face of Alzheimer’s disease—a younger patient diagnosed earlier because of greater awareness and better diagnostic techniques.

The First Signs

Jay with wife Marilyn

“Starting in 1998, I experienced balance issues, including several instances of falling down, and I was bumping into things.   Years later, during my final months at work, I began to feel incredible fatigue,” said Smith. “It was the overwhelming fatigue that forced me to take some time off to determine what was going on with my health.”

After a three-month series of medical appointments, which led to a false diagnosis of sleep apnea as the cause of my fatigue, I felt like giving up,” added Smith. “I was at a dead end.” It was a full year later that Smith finally was accurately diagnosed with early stage Alzheimer’s disease.

According to Steven DeKosky, MD, the most commons symptom that people experience in the early stage of Alzheimer’s disease is a deficit in short-term memory. “Old memories are usually fine,” said DeKosky. “If we ask patients even with a moderate disease where they grew up, who their favorite teacher was in high school, they usually are able to answer those questions. Overwhelmingly, the most common problem is recent memory.”

Managing Life with Alzheimer's

Jay playing the GuitarToday, Smith is actively managing his life and future with Alzheimer’s. He belongs to three early-stage support groups, takes medications and practices a mind-body approach to living with the early-stage symptoms. “The very afternoon our doctor told us I had early stage Alzheimer’s, my wife, Marilyn, and I began a quest to determine what we would do with my diagnosis and my health,” said Smith. “I take a holistic approach to my health and living with Alzheimer’s. I am committed to living my life fully and having as much joy and impact each day as possible.”

Smith’s daily routine consists of exercise, healthy eating, and learning as much as possible about the latest research and treatments for Alzheimer’s. “Living life to its fullest and enjoying each moment is important to me, along with love and intimacy, my commitment to family and meditation.” Smith is aware of the next chapters he faces with the disease and the toll it may take on his wife, children and other family members. “It’s a constant awareness of mine—the stress that my wife will face down the road. And she has her own support group, too,” explained Smith. “I’m aware of how difficult Alzheimer’s can be on caregivers.”

Smith recalls watching The Forgetting documentary and the comment made by Butch Noonan, one of the family members profiled in the documentary, “All I can do is make a plan for the future and live my life.” For Smith, living his life intentionally and preparing for the future are possible through an accurate early-stage diagnosis—and the gift of time with his loved ones.