My Alzheimer's Journey
Part 93 - When Did My Alzheimer's Disease Begin?
In recent months, I have spent a lot of time thinking back and wondering when my Alzheimer’s disease actually began. I am curious, not just about my own journey; but, what diagnostic steps can be taken for people in their 30s and 40s to determine if they have preclinical Alzheimer’s disease (AD) or if they are likely to get AD.
A study published in early 2019, states that preclinical Alzheimer’s disease may begin 15, or even 20, years prior to clinical Alzheimer’s. Another study published in 2012, stated that “concentrations of amyloid-beta (Aβ)42 in the CSF (cerebrospinal fluid) appeared to decline 25 years before expected symptom onset.” This decline is an early biomarker for AD, indicating increased amyloid plaque deposition in the brain.
As a child, I guess I was clumsy because I recall numerous falls that resulted in scalp hematoma or a “goose egg”. Occasionally, my parents took me to the doctor. Generally, they just applied ice and let nature take its course.
With adulthood came stress. Anyone self-employed knows that constant stress is part of the game. I did not focus on eating a healthy diet. I traveled extensively, going to video production locations, corporate events I was managing, and meetings with clients. That travel was certainly not healthy. I often felt like a magician juggling six or seven balls.
A quick anecdote that I still find amusing, although it was anything but amusing at the time. I was in El Salvador with a video crew and a client from an advertising agency in New York City. We were documenting the working conditions at an apparel manufacturing plant. The plant manager wanted us to go see an employee’s home (as evidence that he paid top salaries). He warned us that the home was in a dangerous part of town. I suggested that my client and I should go see the home before taking the crew. We get in the back seat of a large SUV with two armed guards in the front. At some point, the driver/guard stops at a bodega to ask directions. Suddenly, there was this incredibly loud noise. My client and I hit the floor of the SUV immediately. We thought we were being shot. The guard in the front seat starts laughing. The noise was a car backfiring. Those guards never let us forget being scared Americans. I think that trip took a few months off my life.
In the past ten years, I knew my memory was slipping. I ignored those incidences and blamed it on having a “senior moment.” I also recall decisions I made that were not the smartest choices. In more recent years, I placed trust with unqualified employees that resulted in a variety of challenges. There were some financial decisions I made that in hindsight were not prudent. I became angry at inappropriate times.
From my current vantage point as someone with early stage AD, did my childhood head trauma, my stressful career, and my less than healthy lifestyle contribute to my illness? Did I have AD as much as ten years ago?
The answer to those questions will never be known with any degree of certainty.
The takeaway seems to be that several steps should be taken to aid in the prevention of AD. In my layperson’s mind, I believe these steps should include:
early education about dementia and Alzheimer’s
improved education about nutrition
sweeping changes in the fast food industry so healthy choices are affordable for everyone
genetic testing to identify the risk of future AD development
continued research to find biomarkers for AD and dementia
early treatment protocols
Before someone mentions the cost of my wishlist, let me share the following estimates with you. These statistics are for 2024 in the United States.
6.9 million people have Alzheimer’s
12 million to 18 million people who have not been diagnosed
18.1 billion hours of unpaid work taking care of Alzheimer’s patients
250,000 children between the ages of 8 to 18 who provide care to someone with Alzheimer’s
$360 billion estimated healthcare cost to the United States for treating Alzheimer’s patients
The total lifetime healthcare cost for someone with Alzheimer’s is twice the cost for someone without Alzheimer’s
I think it would be smart to fund prevention steps and save money on treatment. Because, the worst statistic of Alzheimer’s is this: there are zero survivors.
Before I go, I want to give a shout-out to a Redditor known as TexV88. This complete stranger offered to review my online store and make recommendations to improve it. I am not a web developer or an e-commerce expert, so I knew the store needed help. Clearly, TexV88 is an e-commerce guru. They presented me with detailed instructions to take my amateurish store to a professional level store. All at zero cost. I have implemented most of the changes and the rest will be completed in a few days. Thank you TexV88. I hope we can meet one day so I can buy you a beer.
As many of you know, Linda and I have struggled to meet our increased expenses since I started my treatment at Duke. I am happy to report that we have signed a contract with a realtor to sell our South Carolina home. We have also contracted with an auction company to sell the business tools and equipment. If all goes well, we should be in much better financial shape in a few months. In the meantime, if you are able to help us, we will be forever grateful.