In speaking openly and honestly about Alzheimer’s, Lee Ferrero helped us all

Lee Ferrero died March 29, 2017, seven years after he wrote about his Alzheimer’s diagnosis in a Tribune Viewpoint. Here, in 2005, he stands in the Private Industry Council one-stop career center. Ferrero was the president and CEO of the group, which helps local job seekers and employers connect with one another.
Lee Ferrero died March 29, 2017, seven years after he wrote about his Alzheimer’s diagnosis in a Tribune Viewpoint. Here, in 2005, he stands in the Private Industry Council one-stop career center. Ferrero was the president and CEO of the group, which helps local job seekers and employers connect with one another. The Tribune file

Among other benefits, journalists have the pleasure and privilege of meeting some remarkable people. Lee Ferrero, who died March 29, is high on our list of amazing individuals who have crossed our path.

We first got to know Lee when he served as president and CEO of the Private Industry Council, a position he held for 21 years. He was a tireless advocate for the unemployed and underemployed — be they teenagers who dropped out of high school or successful, midcareer professionals suddenly laid off in a downsizing.

Work wasn’t his only passion; he followed local politics closely and was a frequent letter writer, weighing in on everything from the Los Osos sewer (he was among the project’s biggest boosters) to Jordan Hasay’s track career. (Lee was a track star himself during high school and college.)

He was, to our delight, an avid fan of newspapers.

“A great day for me begins with The Tribune, Los Angeles Times, The New York Times, USA Today, San Francisco Chronicle and The Wall Street Journal in my hands, in a local coffee shop, with a bottomless cup,” he once wrote.

In April 2009, we reported on a retirement bash for Lee and also mentioned that he had been on medical leave for the previous few months.

The following year, Lee submitted to us a courageous and poignant essay that revealed the extent of his medical issues; he had been diagnosed with Alzheimer’s disease.

He wrote honestly, matter-of-factly and, yes, optimistically about his experience.

Here’s what one Tribune reader had to say about the piece: “His words were intelligent and thoughtful. He imparted a feeling of calmness to a subject that strikes fear into most of us.”

Exactly. That’s why we are republishing the essay today, both for the information it conveys and as a tribute to a man who did not let challenges — even the challenge of a devastating illness — defeat him.

Some of the figures in the essay may have changed; for example, it’s now estimated that 5.5 million Americans have the disease — a figure projected to increase to a staggering 16 million by 2050.

That makes Lee’s insightful essay every bit as relevant and powerful today as it was in 2010.

You can learn to live with Alzheimer’s

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.

Remembering Lee Ferrero

A celebration of life will be held June 3; time and place will be determined later.

Donations in memory of Lee Ferrero may be mailed to the local office of the Alzheimer’s Association, 3232 S. Higuera St., Suite 101 A, San Luis Obispo 93401; or online at www.alz.org. Click on “Walk to End Alzheimer’s” on the right side of the home page, navigate to the San Luis Obispo walk and donate to “Gray Matters.” You can also register for the 2-mile walk, which is scheduled for Oct. 28.