In the early 90s, I fiercely challenged a New York Times journalist’s insulting claim about children raised by single mothers. My small village of family and friends proved him wrong. Now, decades later, in 2025, I face another societal silence. Like many Southern women, I was raised to avoid certain uncomfortable truths. October 1st, 2024, my pre-diagnosis of Alzheimer’s was delivered, and confirmed via many tests at Mayo Clinic in January 2025. This is my reality, not a whispered “dementia” secret that stole family memories from two of my aunts. Just as I stood up for my child and single mothers in the 90s, I will not be silent now. This is a fight I intend to wage, demanding awareness and shattering the stigma surrounding Alzheimer’s. Some things just seem to require my voice. Thank you for listening as I attempt to take you on my journey in hopes that knowledge is indeed power and that someone else is helped along the path.
The other day a friend stated, “If I have Alzheimer’s then I don’t want to know.” While I don’t share that view, I understand where the sentiment originates. Until very recently, there has not been a way to effectively diagnose Alzheimer’s in a living patient. And honestly, there was very little to change the course of the disease progression so why find out.
I’ve always believed that I can face anything as long as I know what I’m facing, however, in this case, I did not seek out the diagnosis; it found me. As a result of my incredible primary nurse practitioner’s care, I was undergoing cardiac testing that evolved into addressing some neurological concerns. Having had cervical surgery about twenty years ago (after a scare that was thought to be a stroke), I attributed my recent “brain fog” to that issue. MRIs, PET scans, blood work, etc., delivered a diagnosis of amyloid plaque that was leading to neuronal damage and cognitive decline. In other words, plaque was clogging up my brain in the same way a different plaque was messing with my heart.
Early-onset Alzheimer’s.
Wow. Didn’t see that coming. But…
Now I know what I’m facing.
I was very blessed to find a wonderful, caring, smart cookie of a doctor at Mayo. He delivered the diagnosis in a manner that did not result in fear but hope. He set up a course of action that included a nutrition and lifestyle coach, explained medications that might prove helpful, and told me about two antibody intravenous (IV) infusion therapies that recently received traditional FDA approval which targets and removes beta-amyloid from the brain. The trial results confirmed cognitive and functional decline in people living with early Alzheimer’s. He asked if I was interested (yes, tell me where to sign up!), explained the side effects (they are not for the faint of heart), and the journey began.
I will save the infusion journey for another post because at this point there were many, many more pressing decisions to pray about and make (but if you are curious google lacanemab). To tell my family or not. To tell friends or not. Buy long-term care insurance or not. Update my will, assign a medical and financial power of attorney, establish a DNR, research the supplements suggested, learn to shop on the outside aisles, the ethicalness of keeping my job, the list goes on and on. The biggie? Decide to face that “dementia” stigma…opt to keep or challenge that societal silence. I guess we know what I decided on that issue.
Thanks for reading, may God’s peace be with you today, Teresa
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