Millions of Americans are rightfully terrified of Alzheimer’s disease. They have witnessed its devastating impact on their families and friends. But we, five patients from different corners of the country, offer our stories to bring hope to others. We reclaimed our lives from this devastating disease by getting diagnosed early enough to benefit from new anti-amyloid treatments.
Our lives show these new treatments can slow progression and add meaningful time.
Like millions of Americans, we followed expert guidelines to reduce the risk of cognitive decline: exercising regularly, following healthy diets, staying mentally and socially active, and building lives around serving our families and communities.
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And still, Alzheimer’s came for us.
Disease prevention is a critical piece of the fight against Alzheimer’s. And yet, lifestyle measures alone did not prevent our decline.
Each of us was diagnosed early enough for one of the new anti-amyloid treatments to become an option. These treatments work best when initiated early. We knew they were not cures, but rather an opportunity to slow the disease enough to preserve the moments, independence and relationships that make life meaningful.
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For us, treatment has been a lifeline.
I, Brent Beasley, am a retired internal medicine physician. When I was diagnosed with Alzheimer’s, it helped explain the lapses that led my employer to terminate me before anyone understood what was happening in my brain. With treatment, I went from losing control of my daily routine to once again serving as a deacon at my church, working as an advocate for patients with the disease, and teaching medical students about compassionate bedside care.
I, Lori Baetz, a retired engineering technician, went from experiencing terrifying episodes of getting lost in my own neighborhood to returning to my daily walks and routines with confidence and independence.
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I, Ralph Carmona, a retired community and corporate sector advocate, have run five marathons since my 2015 diagnosis and treatment in a clinical trial. I am now able to serve on advisory boards, engage in public outreach for Alzheimer’s research and financial support, and continue running marathons. I often tell people that I went from not making my high school track team to qualifying for the Boston Marathon years after my diagnosis.
I, Kathi Rigby, am a mother, grandmother and advocate. Treatment improved my memory and mental sharpness, giving me more time to make memories with my husband, six children, 22 grandchildren and two great-grandchildren. It has also allowed me to continue serving my community and advocating for other patients to inspire hope rather than surrender to the disease.
I, Michael B., am a prolific lifelong entrepreneur. I have never let my brain idle and have exercised daily since I was 15. And yet, three years ago, my family and I noticed I was in a downward cognitive spiral, and I was diagnosed with Alzheimer’s disease. Treatment has given me my life back. Now 85, I am physically and mentally strong. Every day, I complete a 1.5-mile walk, 25 pushups and 35 sit-ups. I drive independently, frequent the gym, and pour energy into my loved ones.
We are not alone. Each of us knows more people who have benefited from early diagnosis and treatment.
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Alzheimer’s remains a devastating disease that requires more research to improve our understanding of why these medicines slow progression, how they can be improved, and what other breakthroughs may still lie ahead. But early diagnosis is a gift. It gave us the chance to pursue lifestyle interventions, plan for the future, participate in clinical research, and benefit from treatment before irreversible cognitive decline occured.
We want that chance for others.
To change the trajectory of Alzheimer’s disease for future generations, early diagnosis must become a national priority. Patients deserve the chance to learn what is happening while they still have time to act.
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That means expanding access to blood tests that can help identify Alzheimer’s disease earlier and more accurately. It means empowering primary care doctors — the clinicians many Americans see most frequently — to recognize cognitive impairment sooner and guide families through treatment and lifestyle options. It means supporting caregivers so patients can remain at home, engaged and independent for as long as possible.
A brighter future would also require ensuring that patients who are good candidates for these treatments can pursue them without burdensome Medicare administrative policies and private insurance denials that block access.
Better tools to fight Alzheimer’s disease are finally here. We ask that current and future patients have the opportunity to use them.
Lori Baetz is a retired engineering technician in Haslett, Michigan. Kathi Rigby is an Alzheimer’s advocate and patient living in Anaheim, California., and Summerfield, Florida. Ralph Carmona is a retired community and corporate sector advocate in Portland, Maine. Michael B. is a retired entrepreneur in Overland Park, Kansas. Dr. Beasley and Mr. Carmona appear in the new podcast series Ahead of Alzheimer’s.
