Luke’s story: Living life to the fullest with early-stage Alzheimer’s

“Alzheimer’s” is a scary word.

Almost three years ago, I started to notice some minor changes in my short-term memory. My wife, Paula, would point out day-to-day things that I would miss, or I would ask her the same question more than once. None of these issues affected my work or daily activities.

At the time, I was working as an attorney and very active in the Lake Highlands area of Dallas. It would have been easy to assume I was forgetting things because I was not paying attention or was too busy. I began to question my cognitive abilities.

At my annual physical in 2022, I told my primary physician about my concern about apparent short-term memory issues. It took an extraction of pride to admit my issues to someone other than my wife. My physician referred me to the Memory Center at Baylor University Medical Center for consultation. If I had not raised the issues with my doctor, my early-stage Alzheimer’s disease would not have been diagnosed and addressed.

“You have early-stage Alzheimer’s.”

I first met with a clinical neuropsychologist and underwent extensive written and verbal assessments. The test results indicated that I had two areas of mild cognitive impairment, which could be a sign of Alzheimer’s. My neurologist ordered a type of imaging test called an MRI to rule out other conditions like a stroke. That test was clear.

A couple of months later, I had a positron emission tomography (PET) scan. It showed areas of plaque in my brain, a common feature of Alzheimer’s. A blood test also revealed that I had a double gene related to the condition, even though neither of my parents nor anyone two-plus generations back in my family had dementia.

Based on this information, I was officially diagnosed with early-stage Alzheimer’s in April 2023. Other than wearing glasses for bad eyesight since elementary school, I’ve generally been healthy. This was the first time I had ever heard the word “diagnosis” applied to me.

Surrounded by support

My neurologist prescribed a pill to help slow the progression of my condition. As Paula and I processed our next steps, we had support from an advocate with the Alzheimer’s Association who comes to the Memory Center one day each week. We discussed our lives, our lifestyles, what the diagnosis meant and what it did not mean. She was a wealth of information and encouraged us to call at any time with questions—she encouraged us to “let her be our Google” as we learned about living with Alzheimer’s.

Our children, Meredith and Oz, and their spouses have been involved with our Alzheimer’s journey ever since the first testing and continue to provide love, support and encouragement. After coming to grips with the diagnosis, we slowly started to share our news with friends, both near and far.

My neurologist recommended that I look at ways to reduce stressors in my life. In June 2023, I made the decision to retire and focus on my “new normal,” which focuses on a healthy and active lifestyle.

Hope through a new drug

Throughout the process, I was fortunate to have a neurologist who was at the forefront of treatment options. She told me about a new monoclonal antibody to address early-stage Alzheimer’s symptoms by reducing amyloid plaque in the brain. In July 2023, I saw a tweet that the FDA approved this new drug—I was thrilled that I might be able to start treatment with it.

Within the next couple of months, I received my first hour-long infusion of the drug. I continue to receive biweekly infusions without side effects. My doctor told me that I am among only 130 Baylor Scott & White patients and about 2,000 in the nation to start these infusions. I am blessed to have Baylor Scott & White and live in a metro area with access to the treatments.

Alzheimer’s has a big and scary stigma. People don’t talk about it because they think nothing can be done to treat or deal with the disease. With new medicines, there is new hope. For me, early recognition and detection were important. If I had waited years before seeking an assessment, I might have been too late to receive treatment.

Living life to the fullest

Paula and I have worked to create “checks and balances” to help with my short-term memory issues, learning what works best for each of us and both of us. Our friends continue to say that they were surprised to hear of my diagnosis and that they cannot tell any difference in me after the diagnosis. This is reassuring and gives me the confidence to live a full and robust life.

We continue to spend quality time with our children and four grandchildren, remain active in church and our community, and travel to new and favorite locations. We are involved with Alzheimer’s awareness efforts and look forward to serving as advocates with the Alzheimer’s Association. I continue to focus on ways to support my overall health with exercise, diet and activity.

I hope to dispel the stigma and rumors that surround an early-stage Alzheimer’s diagnosis. Treatments are finally available, and there are numerous resources to assist Alzheimer’s patients and their families. My diagnosis is NOT a dead end—instead, it is an opportunity to make the most of life and living.

It may sound strange, but in many ways this past year has been one of the best years of my life and our marriage. We know that there are hard times ahead with Alzheimer’s, but I have found a new level of intentionality. I have faith that I am on the same road that I have always been on. Alzheimer’s is a detour, but it does not change my destination.

This story was contributed by Luke Davis, a patient and advocate for Alzheimer’s disease awareness.

If you’re concerned about your memory or have questions about Alzheimer’s disease, connect with a primary care provider.