I have reluctantly accepted membership into a growing group of Americans: those afflicted with Alzheimer’s disease. Three years have passed since my diagnosis, but I’ve known something was wrong for close to a decade.
My first clues came as early as 2001, at my career peak as president of the Private Industry Council of San Luis Obispo County. For several years, I made excuses for memory lapses. I was tired, worked long hours and weekends, and was under continued stress. I attended a national conference in 2006, woke up in the hotel on the first morning and did not know where I was or why. I spent most of that day in a fog.
This episode was unnerving and scary. It shook my self-confidence, but it also compelled me to find out once and for all what was wrong. I visited the Mayo Clinic in Arizona twice and UC San Francisco a couple of years later.
Although I had suspected for years that I might have Alzheimer’s disease, it was a jolt to hear those words. For a while, my family and I only told close friends. Today, I’m more open about my diagnosis, partly because I realize people often misunderstand what Alzheimer’s is.
My doctors tell me this disease only moves forward, not in reverse, and has no known cure. There are, however, ways to treat the symptoms: I use a continuous positive airway pressure device that overcomes sleep apnea, which was complicating my memory problems. I now awaken more rested and alert than ever before, and my memory has sharpened. I also take Aricept, a leading prescription medication for slowing the progression of Alzheimer’s.
Most notably, I made the big decision to retire a couple of years ago after my doctors explained that reducing stress might help slow the progression of Alzheimer’s. It wasn’t a decision I made lightly. I’ve always done work that I’ve loved and chosen work that has greater meaning because it helps people in need. Ultimately, I came to realize that I needed to start helping myself and do whatever I could to manage Alzheimer’s.
It is one of the best decisions I’ve made. I’ve never had a big ego, but an experience like this can crush self-confidence. During my final year in the job before retiring in 2009, I doubted myself every time a meeting was held. I was forgetting materials I needed and found myself reading material when I should be listening.
Now, with the stress of work gone, I have gained an inner calm. I can get confused, but I make time to rebalance. Best of all, without the worry and details of work every day, I can focus on things that matter most to me.
I’ve realized over the last couple of years that it’s important to be open and honest about Alzheimer’s, because people don’t always know what to do or say.
For my part, some days I feel sharp as ever, but the truth is, even in retirement, I forget about appointments. I start running an errand and forget what I was doing, and I don’t remember that I told one person the same story two or three times. This is also the truth: it doesn’t really matter.
Some people remind me of what I forgot, while others choose to ignore it. I don’t think there’s a right answer, other than recognizing that people with Alzheimer’s are the same people they were before the diagnosis.
The numbers living with this disease are large: 26 million worldwide, 5.3 million in the United States and 6,000 in San Luis Obispo County. Someone in the United States is diagnosed with Alzheimer’s every 70 seconds. Each one of us struggles with the diagnosis in one way or another.
And me? I’ve found a measure of peace with Alzheimer’s by learning more about it, managing its progression as best I can, and focusing on what it cannot take away.
For more information about Alzheimer’s, contact the local California Central Coast Chapter of the Alzheimer’s Association at 547-3830 or www.alz.org/ CaCentralCoast.
Lee Ferrero lives in Los Osos and was president of the Private Industry Council for 21 years before retiring in 2009.