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Early-Onset Alzheimer's: My Story

I was diagnosed with early-onset Alzheimer’s in 2009, when I was 59 years old. My doctor had taken a CT scan of my brain because I had fallen off my bike and hurt my head. The scan revealed that I had Alzheimer’s.

I realized at the time of my diagnosis that I had been experiencing symptoms years before, with horrific short-term memory loss. I found that I was having difficulty recognizing familiar places and people. I also had the beginnings of poor judgment and rage.

When my doctor told me I had Alzheimer’s, my first instinct as a journalist was to report on it rather than feel sorry for myself. To fight an enemy, you have to know an enemy. I began to research so I could eventually write a book about my Alzheimer’s battle. I met with experts and learned all I could.

Unfortunately, I knew the ending of my book before I even started writing it.

A family disease

I had a front-row seat witnessing what Alzheimer’s could do by watching my maternal grandfather and my mother both suffer for years and then die of the disease. My father and a paternal uncle also succumbed to Alzheimer’s.

I am now on a similar track as my mother. She taught me to fight as long as possible and do the best that you can. And then just let go. There are times now when I want to let go, but I am still able to carry on. When the day comes that I get up in the morning, put my fingers on the keyboard, and don’t know what to do, that’ll be the day I want to check out.

Treating the symptoms

Daily medications serve to keep my engine in tune and slow the progression of the disease. I take 23 mg daily of Aricept; 20 mg of Namenda in a combined therapy that serves to reboot the brain; 50 mg of trazodone to help me sleep; and 20 mg of Celexa to help control my rage. There will be times when I hurl the phone across the room, a perfect strike to the sink, because I can’t remember how to dial; when I smack the lawn sprinkler against an oak tree in the backyard because I can’t recall how it works; or when I push open the flaming hot glass door to the family room wood stove barehanded to stoke the fire just because I thought it was a good idea, until the skin melts in a third-degree burn; or simply when I cry privately, the tears of a little boy, because I fear that I’m alone, nobody cares, and the innings are starting to fade.

I rage more now in frustration at what I cannot do, when my mind shuts down, when I use bad judgment, don’t recognize people, or get lost in familiar places. I have a strong Irish Catholic faith, and I know I will be going to a better place. I am not afraid to die. What does scare me is the thought of my own three children having to deal with this disease too. That scares the hell out of me.

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"A Place Called Pluto," directed by Steve James from David Shenk on Vimeo.

A day in the life

There are periods in the day when I feel great, but there is not one day that goes by where I don’t feel that a sliver of my brain is being sliced off, never to return. It comes in different ways. It could be a fuzziness, or it could be not being able to think things through like I did before. These lapses are a constant reminder that the enemy lurks within.

I also suffer from “sundowning.” This is how some medical experts refer to the Alzheimer’s phenomenon of end-of-day confusion and restlessness. Sundowning is a period of increased uncertainty, agitation, and drifting in a fog as light fades to black, a time of greater rage and mood swings.

With the development of Alzheimer’s plaques and tangles in the brain, theorists suggest there may be a disruption at sunset in what doctors call the suprachiasmatic nucleus. This is the tiny region of the brain’s hypothalamus that is responsible for controlling bodily rhythms. This structure keeps the body on a 24-hour schedule.

I also tend to wander. I was up again at 4 a.m. the other night, one of five nocturnal ramblings in the early morning. Picking my way in the dark in familiar territory within my home on Cape Cod, where I have lived with my family for 34 years, I fumbled into the bathroom as I felt the numbness creep up the back of my neck like a penetrating fog, slowly inching to the front of my mind. In the moment, it was as if a light in my brain had been shut off. I had a dark feeling of not knowing where I was or who I was. Panic overcame me.

So I reached for my cellphone, which I was using as a flashlight, and called the house. My wife, Mary Catherine, deep asleep in our bed just 20 feet away, rose like Lazarus from the grave to grab the phone, fearing an early morning call about a car crash involving one of the kids, or the death of an extended family member.

It was me, just me. I was lost in the bathroom and didn’t know what to do.

What’s next

Soon I will be 67 years old. A month later, Mary Catherine and I will celebrate our 40th wedding anniversary.

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I continue to speak out about Alzheimer’s, and I continue to write about my experiences. I try my best to be a useful guy in the ever-growing chorus of people who are saying, “Let’s beat the drum loudly so we can raise awareness and help fund research, so other people don’t have to deal with this brain disease.” I belong to a group of dedicated people who are changing the conversation so more people come to realize that we have a big medical problem that has to be brought out of the closet, discussed, and defeated.

Yes, I know Alzheimer’s will eventually take me out, but when I start each day, I resolve to not let it own me. How long can I outrun my demons? I used to think that it would be “no sweat” and that I could do it indefinitely. Now, I am not so sure. Even so, my goal is to stay the course as best I can. I try to do each day what Bill Belichick, the famed New England Patriots football coach, tells all his players: “Go out there and do your job.”

Editor's Note: Greg O’Brien is an award-winning Cape Cod journalist, husband, and father of three. His latest book, On Pluto: Inside the Mind of Alzheimer’s (Codfish Press),* won the 2015 International Book Award for Health.

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