Why I Was Afraid I Was Getting The Big 'A' -- Alzheimer's

I thought I was getting Alzheimer's. I really did. And how ironic would that be? I blog on the Huffington Post and Alzheimer's Reading Room about my experiences as an Alzheimer's caregiver for my Romanian life partner, Edward Theodoru.
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I thought I was getting Alzheimer's. I really did. And how ironic would that be? I blog on the Huffington Post and Alzheimer's Reading Room about my experiences as an Alzheimer's caregiver for my Romanian life partner, Edward Theodoru. I make public presentations about the same topic. I even published an award-winning book about my relationship with Ed that focuses on the years he had Alzheimer's.

For more than three years I've had hallmark symptoms of the disease. I frequently forget things, lose things, mix things up and screw things up. Some days at work it's so bad I'm embarrassed. Other days I'm so disheartened I simply give up trying to do any work. In fact, this figured into my recent decision to retire. Doing my job is just getting too difficult. And I have the same crippling problems at home, too.

I told my physician about this twice over the years. Each time he told me it was just stress from my job and/or side effects of medications I take for a chronic health problem. He also said I am so attuned to the symptoms of Alzheimer's because of my experience with Ed that I'm interpreting every little thing as a sign of dementia.

Everyone else I talked to, including my friends and even some other physicians, told me the same things. As my functioning continued to decline, no one would pay any attention to me. This just goes to show, as I wrote about in an article I published here on the Huffington Post -- Alzheimer's and the Devil Called Denial -- when people have symptoms of dementia, nearly everyone who cares about them is in denial.

I finally decided to go to a neuropsychologist. After an extensive interview I had four hours of pencil and paper tests. He concluded in his report ". . . the pattern is suggestive of neurodegenerative changes that are often associated with dementia of the Alzheimer's type."

I was crushed and determined to find evidence that would contradict his opinion, so I went to a neurologist. He was extremely thorough and ordered an MRI of the brain, an EEG, an overnight sleep study and several other tests.

It was with great apprehension that I returned to get the results. The first thing he said was, "I don't see anything that would suggest Alzheimer's.''

I was immensely relieved and immediately asked him, "Then what's causing my problems?"

"The sleep study revealed that you have severe sleep apnea," he said. "That's probably having a serious effect on your memory and causing your confusion and lack of alertness. You stopped breathing long enough to awaken you (although you don't remember it) on average every two minutes all night long."

I was astounded. Every two minutes? All night long?

He continued, "It's like pushing the snooze button on your alarm clock every two minutes. The study also showed that you had no REM sleep."

That was even more shocking. I wondered how I'd been functioning at all, let alone achieving the successes I'd been having at work. I later jokingly told a friend that I must be a genius to have accomplished what I had despite being so sleep deprived.

I never thought I'd be happy to have a sleep disorder but on the contrary -- I was delighted. It's something that can be successfully treated (with a CPAP machine), unlike Alzheimer's, whose victims are doomed.

When I got home I did a little research on the Internet. According to the Heart, Lung and Blood Institute, sleep apnea can cause, among other health issues, memory problems, difficulty concentrating and mood changes.

I am embarrassed to admit that during those three years I didn't take my own advice. In an article, "What If It's Not Alzheimer's?" I published here on the Huffington Post I concluded "So if you or a loved one is having symptoms of Alzheimer's be sure to consult a physician. And the sooner the better. It just may turn out to be something else that can be partially or completely reversed."

After that I published "Do You Worry You're Getting Alzheimer's?" in which I said I have a friend who's experiencing bothersome symptoms and is afraid she's getting Alzheimer's. In fact, as you may have guessed by now, I was writing about myself -- not a friend.

I also published "25 Tips for Coping With Memory Problems." It was popular because everybody has some memory problems. And it was incredibly easy to write. First I made a list of 50 techniques I use to cope with my own weak memory. Then I simply whittled it down to 25, although in the article I didn't mention how I'd come up with the list.

So now all that remains is to see if treatment for my sleep disorder stops my memory and cognition problems. The neurologist said I should have dramatic results although it will take some time. I am eagerly awaiting those dramatic improvements. In fact, I feel better already just from knowing it isn't Alzheimer's!

For more about Alzheimer's and my relationship with Edward Theodoru read my book, Come Back Early Today: A Memoir of Love, Alzheimer's and Joy, and visit my website, which has a wealth of information for Alzheimer's caregivers.

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