Three years ago, responding to my concerns about memory loss and occasional confusion, a neurologist performed a series of tests dictated by the circumstances, including an MRI and an EEG and others.
He told me I was suffering from non-Alzheimer’s related cognitive dementia. His words shocked me. Suddenly visions of future incapacities dominated my thoughts and turned to questions without answers: Is a memory care home in my future? Will I be able to communicate? How will my family cope, financially and otherwise? How quickly will my deterioration occur?
I was profoundly concerned about the future, which was apparently going to be shaped by my mental incapacities rather than more normal aging challenges.
Accepting that reality triggered an avalanche of emotionally draining considerations, conversations and occasional tears. My difficulties, then and now, are associated mostly with long-term memory loss. I also sometimes get temporarily confused over otherwise routine tasks, and I occasionally forget why I am where I am--all telltale signs of dementia.
A year ago, I decided to write a monthly column in hopes of fostering a broader understanding of the condition that afflicts one in every nine Americans over age 65. I didn’t know how long I’d be able to continue writing, but I figured I’d find out while sharing my journey and that of others.
There’s a lot that doctors don’t understand about causes or cures for dementia, but those who suffer from the insidious condition generally experience a steady regression of their abilities to function normally, a sad excursion many readers have described.
Not long after the column was launched I noticed that my situation was different from the majority of readers who wrote of their experiences.
My symptoms had remained stable while theirs generally got worse, sometimes rather quickly. My wife, Barbara, and close friends all agree that my condition has not regressed for a long time.
Several of my last few columns have relied heavily on reader anecdotes to illustrate the problem rather than my own experiences. To this day, my neurologist can’t determine what causes my problem. I believe my symptoms are somehow associated with the seizures I had not long before memory and thinking difficulties emerged, a conclusion the neurologist dismisses.
Whatever the case, I am greatly relieved that my condition has remained the same, and I have decided that this will be my last column.
The first column defined the goal: “My hope is that we will share our experiences in future columns and that, together, we can foster a wider, deeper understanding of the challenges created by the insidious disease called dementia.”
Writing the column has certainly expanded my knowledge and perspective, and, I hope, that of readers. I still have huge holes in my long-term memory.
And occasional problems remain with navigating to places I’ve been many times before. Recently during a cruise, when a performer asked how many people were on their first voyage, Barbara reminded me before I could raise my hand that this was our fifth cruise, not our first, although I have no recollection of the others.
And it’s difficult to describe what it feels like to look at photos of myself in different settings or at different events I don’t recall. It’s sort of like being in an ad for an event I could experience some day, not a prompt for fond memories of important happenings in my life.
But I have learned from hundreds of you that dementia’s challenges can be far more frustrating, shocking and downright overwhelming to its victims.
Hearing detailed, insightful narratives from readers about living with dementia made me both fear my future and begin to seriously question whether I was headed toward the same destiny. Mine are far less intensely pervasive or progressive.
But it wasn’t until my primary care physician outright disputed the dementia diagnosis that I realized he might be right.
“I don’t believe you have or ever had dementia,” he said.
Through this column, we have shared a conversation about how dementia affects people and those they love, shedding light on a subject that is too often talked about only in the shadows.
You have opened your hearts about your feelings of hope and hopelessness, of your fears of the unknown and the brutal realization of the known.
Regardless of my memory deficiencies, I will never forget your wonderful and encouraging, hopeful messages or the people who have now become my digitally connected friends.
Thank you for providing me with the strength to look in the mirror and to examine, with the help of doctors, my own condition. My neurologist based his original diagnosis mostly on what I told him, so, for now, I have told him I’m okay.
To be fair, he doesn’t fully agree.
“Call it what you like and go on with your life. It might be age-related memory loss appropriate for you,” he said during my last visit. “Enjoy every day and don’t dwell on whatever you decide to call it.”
I’ve decided to take his advice.
Kent Pollock is a retired journalist, journalism professor and the former editor of the Anchorage Daily News. Please share your perspectives, insights and comments with him at firstname.lastname@example.org