My Alzheimer's Journey

Introduction and Part 1

I am scared shitless. A week ago, I was diagnosed with early-onset Alzheimer disease. I am a sixty-eight-year-old man.

To help me cope with the fear and the anxiety I am experiencing, I have decided to chronicle my experiences. Hopefully, my writing endeavor will also benefit both people who are battling this terrible disease and the caregivers for loved ones suffering with AD.

I am certainly not a trained writer, so I ask for your forgiveness when I make stylistic and grammatical mistakes. My AD has also impacted my ability to write and communicate effectively, so reading my journal entries may be challenging at times.

I promise to write from the heart. There will be no sugarcoating. You will read the raw truth about my experiences, feelings, and AD progression. I am obsessed with learning as much as possible about AD, and I will share my findings in this journal.

Finally, I want to learn from others suffering from AD; plus, caregivers, physicians, pharmacists, and others who are involved in AD research, treatment, and care. Let’s have a conversation.

Part One

It all started in the Spring of 2024. I began noticing that my short-term memory was not what it had been. My wife would tell me a few things to purchase at the grocery store and ten minutes later I did not remember the list. Or, I would be on a construction job site and a carpenter would ask me to get a certain size tool from our equipment trailer. In the three minutes it took me to walk to the trailer, I had forgotten what the carpenter needed.

I thought stress, age, and too much on my plate were the cause of my memory problems. In fact, I did not even acknowledge the problem to myself. I certainly did not tell anyone else.

As time went on, I coped with the memory problem by asking people to text shopping lists, meeting reminders, addresses, and other important information to me. My memory was getting worse, and even written lists did not resolve the challenges I faced. I remember the first time I was at a Home Depot with an employee, and we reviewed our shopping list. We split the list and I had a few screws to get. When I got to the hardware aisle, I could not remember the size and type of screws I needed to get. Talk about being embarrassed.

About the same time, I noticed that I would leave words out of texts and emails I wrote. It was a strange experience for me. I would think the word, but it never got typed. I blamed it on being rushed.

Like my memory, my writing problems worsened over the following months.

I knew something was wrong beyond just normal age related memory loss. Could it be stress? My business certainly caused a tremendous amount of stress. I shared my problem with my wife and with my team of tradesmen. They already knew something unusual was going on with me.

It was time for answers.

In the Spring of this year, I had an appointment with my Primary Care Physician to review my anti-depressant medication. I told Dr. Clare about my memory and writing problems. I will never forget our discussion.

The doc and I have an awesome relationship. He is such a cool doctor. Smart, compassionate, friendly, and patient. I never feel rushed when visiting Dr. Clare. He is a great listener. After about fifteen minutes of discussion, Dr. Clare dropped a bombshell on me. He said he thought I had early onset dementia. He told me about several new and promising medications that could slow the ugly progression of dementia. Most importantly, the doc told me I needed to find the best neurologist with experience in AD.

My wife and I started researching neurologists located in the upstate region of South Carolina, where we reside. Everywhere we called was a dead end. Either they were not accepting new patients or the first available appointment was months away. I remember one neurologist who had the ideal education and experience in treating AD patients. As a research professor at the University of South Carolina Medical College and a practicing physician at a leading hospital group, this neurologist seemed tailor-made for me. I quickly learned that the first available appointment was twelve months out.

My cognitive functions were declining. I was frustrated that I could not get an appointment with a neurologist unless I waited six months or more.

It was time to widen the geographic search area. I contacted Duke University and discovered that their neurology department was actively involved in AD research. Most promising was that Duke Neurology (part of Duke Health) was accepting new patients. With Dr. Claire’s referral, I was given an appointment six weeks from the time I first called Duke.