Jun 012012

In 2008, at the age of 62, I was diagnosed with younger-onset Alzheimer’s disease (also known as early-onset Alzheimer’s). Not long after, I retired after serving 23 years as the President/CEO of the Private Industry Council (PIC) of San Luis Obispo County. While I thought I was functioning well, there were ample signs a few years before, indicating not all was necessarily right with my health.

Part of me recognized this, while another part of me chalked it up to work overload. In fact, I knew I was having a problem with my own self-confidence — and my 15 employees saw it more clearly, and earlier, than I did; if we are not careful, we tend to forget how intuitive employees truly are. Fortunately, we all came to a point of understanding that I needed help, and the Board of Directors and staff were ready to seek ways to retain me and keep me functioning, while also making sure we were all honest with one another, henceforth.

I was recognizing changes in my own behavior: I was losing my ability to juggle multiple projects. It took more effort to decide which projects had highest priority — and, worst of all, I realized that my self-confidence as an executive was rapidly eroding. I could not find any solutions to turn that around; I didn’t know how to fix it. This was brought home directly, on a couple of business trips (by auto), when I found myself overlooking familiar freeway exits and driving well down the road before realizing I was way off course.

All of this led my wife and I to visit the Mayo Clinic twice in Scottsdale, Arizona, in 2006 and 2007; we also participated in a battery of testing at U.C. San Francisco. I was finally diagnosed with Early-Onset Alzheimer’s on that visit (also known as Younger-Onset Alzheimer’s), with evidence of “Executive Dysfunction.” Several medical doctors, staff and students participated in that discussion, and they video-taped the discussion.  It was an eye-opening experience.

Back home in San Luis Obispo, we also took the time, on two occasions for me to be tested for sleep apnea, in a local lab located in our community. Outcome: “Positive.” Thanks to the technology of this remarkable invention, I now sleep better than I ever have in my life. While I am no expert in this technology, I am convinced there is a direct (negative) relationship between sleep apnea and potential damage to the brain, over time.

Several months later, when this all sunk in, I resigned myself to accept this fate — over which I would have zero control. But, I also have been able to put a face on Alzheimer’s in our local community, by being an advocate and local voice. I have written several “Viewpoints” and “Commentaries” in our local Tribune newspaper. I have formed a close relationship with our local Alzheimer’s Association Chapter Office and its staff, secured a seat on the three-county Chapter Board of Directors, and also accepted an appointment to the Alzheimer’s Association Early-Stage Advisory Group (ESAG) for the 2011-2012 year. This participation, in turn, has opened more new doors with the National Office of the Alzheimer’s Association in very positive ways.

I am well aware there is no known cure for Alzheimer’s. It’s a given, for now, and I refuse to spend much time worrying about it. I prefer to be matter of fact with regard to my diagnosis and I spend more time out in the community and working with the Alzheimer’s office to support them in their work. If there is anything I worry about, it is my family. Family and friends are the best medicine that any of us will have, in a journey such as this one.

Read about Val’s experience as Lee’s care partner.

Blog author Lee Ferrero is a member of the national Alzheimer’s Association 2011 Early-Stage Advisory Group. He is eager to put a face to Alzheimer’s and alert individuals, communities, the media and local organizations about the critical need to act on this disease and help find a cure.  Lee lives in Los Osos, California, with his wife, Valerie. Lee and Valerie have two children, Jennifer and Eric. They take great delight in spoiling their grandson, John Ferrero Stout.

  19 Responses to “Lee’s Story: My Diagnosis of Younger-Onset Alzheimer’s”

  1. Wow. This is the kind of insight on Alzheimer's one can only get from someone who knows it firsthand. This author should be published much more widely. The world needs to hear his story and others like it.

  2. Well put, Lee! Thanks for putting into words what a lot of us have lived and lacked the courage to talk about.

  3. From a former member of the ESAG group. The world needs to know that if diagnosed early, a person may have many years of a very productive life ahead. There are many of us throughout the county still contributing to our society four, five and more years after diagnosis.

  4. Lee, the picture you paint of a vital man maintaining his vitality for as long as the big A will allow is inspiring. My maternal grandparents both had dementia at the same time and now my dear Mom suffers from vascular dementia. I worry about getting something everyday and look for signs all the time. Thank you for being so uplifting to us all who feel that the diagnosis is just around the corner for us.

  5. Thank you for sharing your story, Lee. Your comment about the possible relationship between sleep apnea and Az really struck me. My dad died in 1993 at age 76 having lived with the disease for nine years. One of my memories of the years I lived at home was the sound of my father's house-rattling snoring…and sudden stops..and then more snoring. I know now it was probably sleep apnea, but he never knew to have it checked out that many years ago. Something to consider. Blessings on your journey.

  6. I enjoyed this article about early on set Alzheimer's. I also have been diagnosed with this. I was diagnosed at age 61 and am now 65, almost 66. I,m married with 4 children and raised a grandson. Never knew this blog existed. Would like to hear from anyone with more info on this Alzheimer's Advisory Group. Thanks. One can reach me at 'luvbytes.djf@Gmail.com. 🙂

  7. Lee, I am happy to see your written document because I know that by doing this and having it printed you will overshadow the stigma that we all desire not to have. Good job.

  8. Lee– I worked at Cuesta College when you were with PIC. Had heard you had a health problem and am very sorry to hear what it is. My husband, Patrick Gannon, a long-time resident of Cambria, also has early-onset. After eight years, he is struggling and we are avid supporters of the National Alzheimer's Plan. Your positive attitude and productive choices are wonderful. Pat and I are relocating back to SLO County and I will doubtless meet up with you and Val at Alzheimer's Association events. Best wishes to you, Connie Gannon

  9. At 58, I too have been diagnosed with early onset Alzheimer's. It was a tough thing to accept. However, I am adjusting, and moving foward. I am blessed with a wonderful family, suppling me with a great deal of support.

    God Bless,

  10. Thanks, Lee. It goes to show that the best tests are those around us. Those close to us are always the first to realize that there may be a problem. It is great that you are not retreating, but staying active in your community. We need to encourage those with Alzheimer's to remain active participants in life. And we need to make sure those who do not have this disease are encouraging, patient and supportive. All the best to you and your family.

  11. My wife and i were absolutely joyful that Raymond could finish up his research because of the precious recommendations he had using your web pages. It is now and again perplexing just to continually be giving for free steps some people could have been making money from. And we also remember we need you to be grateful to because of that. The main explanations you made, the easy website menu, the relationships you can make it easier to instill – it’s everything excellent, and it’s really making our son in addition to our family understand that subject is excellent, and that’s exceedingly indispensable. Many thanks for the whole lot!

    • Kathy, thank you so much for sharing this beiuatful story. After my very brief experience I do know firsthand some of the pains losses, and, of course, now I appreciate this privilege in ways I had not previously imagined.I would like to support efforts to address the myriad of problems facing those who can no longer drive especially those who really shouldn’t or can’t have a set of their own car keys ever again.

  12. My grandma have alzheimer's disease, and it's very hard to handle this. Thankfully, "family and friends are the best medicine" :). Thanks for sharing your story.

  13. I i am 55 years old and have alzhiemers. I was a productiuve psychiatric nurse for many years. When i was given the diagnosis of alzhimers. Once i had the diagnosis i decided ti start to sell flowers and grow them. I made up my mind i was not going. To sit home and do nothing. In addition to flowers. I spend time quilting to keep my mind active. I am part of the alzhiemers study in auburn maine. I challenge myself daily in hopes it will help keep my mind active and current.

    • Lisa, I love your spirit! I hope you are living as you wished you would. My husband was diagnosed several months ago. I wish I could be the saint in our relationship but the his outlook and diagnosis has really fractured our relationship. I wish I was a better person. He has stopped contributing emotionally to our home. I work, not retired but he sits in his mancave. Won't even make the bed, do gardening, clean floor, clean up after himself in the kitchen, he does NOTHING. but he will use his diagnosis as a crutch. I'm crushed. I feel like he is just a lump in the house. I clean around him and feed the lump. I feel like I'm in shock. Unbelievable! He loves to read the internet, endlessly, and critique my work around the house. I feel like I'm staff. I so applaud you for tackling your diagnosis like a warrior. I wish you the best!

      PS I do apologize. I'm worn out and sound/feel like a whiner. I'm not, but I feel like i have no one else to vent to. It just feels awful not to be able to talk about it. Thank you, and I admire your spirit

  14. My dad and my grandmother both had alzhiemers

  15. My husband David was diagnosed with early onset Alzheimer's two years ago. He like you, was having trouble at work and was kept on at work by giving him less responsibilities. His main problem is no short time memory. He is not active and refuses to be due to knee and back problems. His brain scan is not conclusive evidence of the disease. He does have sleep apnea, but is not interested in getting help. Retired now he spends most of his time in a recliner playing games on kindle and watching tv. Thanks for sharing your story. Blessings to you and your family.

  16. I want to share with everyone here the following article from a small UCLA trial that demonstrated that a "systems approach" (lifestyle) can reverse the memory issues with Alzheimer's (which I would think could also positively affect emotion and other physical and mental implications). Here is the link: http://newsroom.ucla.edu/releases/memory-loss-ass
    I hope that this information help someone. If you try this program and it works, please share your story.

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