My Alzheimer's Journey
Part 101 - Why Alzheimer's Awareness Is Important
Happy Monday!
I planned to write about Eppie today. This is a service that utilizes AI to contact Alzheimer’s patients to have telephone conversations based on memories, family stories, etc. Eppie can also provide emergency support and notifications. The idea is to remove some burden off caregivers while benefiting patients. I am not writing about it today because I am waiting for Eppie to respond to my questions.
Instead, I am republishing an essay I wrote for my online store blog. The essay is titled, Why Alzheimer’s Awareness Is Important. The essay is intended for a broad audience that may have limited knowledge about Alzheimer’s disease.
My life was turned upside down in August 2025. At 67 years old, I was diagnosed with early stage Alzheimer’s disease. Not only was my life impacted by the diagnosis of Alzheimer’s disease, my family, my employees, and my friends were directly effected.
Alzheimer’s is a progressive, irreversible brain disorder that destroys memory, thinking skills, and, eventually, the ability to carry out daily tasks. On average, a person with Alzheimer's lives four to eight years after diagnosis.
When I was diagnosed, my wife and I lived in the Upstate region of South Carolina. We enjoyed our semi-retired lifestyle. Our three cats were the highlight of our lives. We owned a small home renovation and repair company that provided income to supplement our social security benefits. Life was good.
It was decided that I was a good candidate for a relatively new drug called Lecanemab. This monoclonal antibody infusion is designed to slow down the progression of Alzheimer's in early stage patients.
We moved to Chapel Hill, North Carolina, so I would be near Duke Health where I receive my infusions. My infusions are administered every other week for at least 18 months. Lecanemab is a high risk drug that requires careful monitoring. I have experienced significant infusion side effects, such as body aches, chills, headaches, and tiredness.
Our move to Chapel Hill meant closing our business and losing that income source. We have struggled financially paying a mortgage on our South Carolina home and paying rent on our new apartment. The cost of living is much higher in Chapel Hill than in Upstate South Carolina. If not for the kindness and generosity of family, friends, and strangers, I would not be receiving Lecanemab infusions at Duke Health.
We have recently listed our South Carolina home for sale. The business assets will be sold soon. We started a small on-line store that we hope will generate modest income once it is established. I also write a Substack blog that raises awareness about Alzheimer's and chronicles my experience. This blog provides limited income from subscriber donations.
My Alzheimer symptoms are worsening. I am no longer able to drive. My short term memory is pretty bad (I have to write notes for everything, I can't recall the day of the week, I can't remember names, etc) I wake up confused most days. Making critical decisions requires help from others.
Why is Alzheimer’s awareness important?
There are over seven million people in the United States suffering like I am. This number is projected to double by 2026.
Alzheimer's awareness is extremely important to promote early detection, reduce the stigma, support caregivers, and drive funding for research into treatments and a cure.
There have been great strides in the development of new Alzheimer's treatment in the past ten years. The pace of scientific research is accelerating. Yet, a cure is not insight.
The lack of adequate research funding frustrates me beyond words. I am an entrepreneur and I believe in capitalism. I do not believe in greed and the accumulation of extreme wealth, though.
There are many individuals in the United States who could fund focused Alzheimer's research without hurting their lifestyle. They may have to purchase a slightly smaller yacht or get by with only one Gulf Stream jet, though.
The United States government could certainly provide grants to research universities to pay for scientists, chemists, and neurologists to seek better Alzheimer's treatments, prevention, and maybe even a cure. Instead, the government spends billions on potentially endless wars, tax cuts to the wealthy, and countless other arguably needless programs.
Awareness in even its simplest form will make a difference. Writing letters to your congressman, participating in a local Alzheimer's walk, wearing an Alzheimer's awareness t-shirt, writing letters to newspaper editors, and most importantly, voting for legislative candidates who support Alzheimer's research.
In my opinion, it is okay to be loud and to be mad. This will get attention. It will raise awareness of this horrible disease. Awareness will lead to funding and research. Research may find a cure and save millions of lives.