I was a doctor caring for Alzheimer’s patients. At 57, I became one. Here’s what’s next

As an internal medicine doctor, I used to care for Alzheimer’s patients. Now, at just 60 years old, I am one. My diagnosis is not the future most people hope for — but there is finally a generation of Alzheimer’s treatments that work for many patients, and I am one of them.

Before my diagnosis, I was a busy, high-performing physician and a present husband and father. Over my career, I completed an internal medicine fellowship at Johns Hopkins, oversaw a medical practice and ran an academic clinic where I taught residents and medical students. I coached my kids’ basketball teams and served as a deacon at my church.

I was someone who helped others, not someone who needed help myself. Then, three years ago, everything changed.

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One afternoon, my supervisor called me into her office and fired me for fumbling tasks I used to handle with ease, asking emphatically, "What is wrong with you?!" Suddenly, I was out of a job, had no health insurance, and still needed answers. What was wrong with me?

My family noticed my cognitive decline, too. I couldn't keep up during a game night, put dishes back in the wrong place, lost track of my phone and repeated questions my wife had already answered.

I was only 57 — younger than most people associate with Alzheimer’s disease — but testing soon revealed the truth. A novel blood test measuring p-Tau217, a biomarker strongly associated with Alzheimer’s, came back abnormal. Further imaging confirmed what I feared most: I had Alzheimer’s disease.

As a doctor, I knew what this diagnosis usually meant. For years, our treatment tools were limited. We prescribed medications that tried to "juice up" the brain. But mostly, we watched patients’ slow demise until they struggled to speak and eventually became unable to swallow. Then we’d call in hospice. Alzheimer’s care was a slog that was hard on families. It was a long goodbye.

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But my wife, my superhero, wasn’t going to let me go without a fight. She knew I still had so much to offer my family, my community and my church.

My neurologist, Dr. Jeff Burns, who runs the University of Kansas Alzheimer’s Disease Research Center, suggested that I would be a candidate for a new monoclonal antibody treatment designed to clear abnormal plaques from the brain. I began regular infusions that have slowed my decline and improved my cognition.

I still have Alzheimer’s — but treatment has given me back the life I feared I was losing.

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Before treatment, I struggled to remember my cues while serving at the altar as a deacon; after the treatment took hold, I had a service where I was able to hit every mark once again.

I’m able to babysit my 2-year-old grandson, Frank, twice a week. I’ve been enlisted to teach medical students how to deliver bad news to patients, which I treat as a solemn duty.

I go on bike rides, which remind me of what it was like to be a kid. I spend precious time with my children and grandchildren. I take three-mile walks with my dog. I write.

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You would think that a treatment capable of restoring someone’s life would be readily available to others like me. But our health care system is still built for late-stage Alzheimer’s, not early intervention. Too often, cognitive decline is dismissed as normal aging, or patients are referred to specialists with long wait times. By the time answers arrive, the window for effective treatment has closed.

What helped me may not work for everyone. But even if a breakthrough Alzheimer’s therapy emerged tomorrow that worked in every case, the same structural failures would persist: People would still be diagnosed too late, priced out of testing and treatment, and blocked from timely care.

That must change.

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Early Alzheimer’s detection should become routine in primary care, using modern tools like blood-based biomarkers to identify the disease early and validated cognitive assessments to detect meaningful changes. While some assessments can now be administered digitally outside specialty care, patients are still funneled to neurologists, creating six-month- to year-long delays that cost critical treatment time. These tests should be accessible and covered, not limited to academic centers or those who can afford to pay out of pocket.

Once patients qualify for an FDA-approved therapy, insurance rules should not stand in the way. Ongoing administrative hurdles and repeated coverage denials disrupt care and force families into constant appeals.

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My wife, Cindy, has spent countless hours fighting insurers to maintain the treatment that has kept me alert, engaged and functioning. At times, those denials have forced me off treatment long enough to lose ground before we could begin again.

A current proposal sponsored by Rep. Young Kim, R-Calif., would extend Medicare coverage to people 65 and under who have been diagnosed with Alzheimer’s. This legislation, called the BRIDGE Act, would ensure people in my situation don’t face the coverage denials and access interruptions that I did.

Primary care providers — often overworked and running behind — are equipped to spot cognitive decline and can administer cognitive assessments, make timely diagnoses and counsel patients on evidence-based lifestyle interventions such as regular physical activity, sleep optimization and social engagement. These interventions matter and can help slow cognitive decline for some patients.

Finally, caregivers must be recognized as essential partners in care. Cindy made it possible for me to get treatment, stay organized and keep living my life. Supporting families is one of the most effective ways to keep people with Alzheimer’s at home, engaged and connected.

Alzheimer’s science has moved forward. Policy has not.

If we want today’s breakthroughs to improve lives for patients like me, families and future generations, we must build a system that finds the disease early and delivers care in time.