Alzheimer's Reading Room
I blog on the Huffington Post and here on the Alzheimer’s Reading Room about my experiences as an Alzheimer’s caregiver to my Romanian life partner, Edward Theodoru.
I even published an award-winning memoir about my relationship with Ed that focuses on the years he had Alzheimer’s.
For more than three years I’ve been having hallmark symptoms of the disease. I frequently forget things, lose things, mix things up and screw things up.
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I forget things that happened just five minutes before, I lose papers I had in my hand seconds before, I put objects in unusual places and I can’t remember if I’ve taken my medicine.
I don’t even try to remember the names of people to whom I’m introduced. And the list goes on and on.
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, 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 against my doctor’s advice. 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 decided to go to a neurologist. He was extremely thorough and ordered an MRI of the brain, an EEG, an overnight sleep study and many 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 but 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, which has no cure.
Come Back Early Today:
Marie Marley, PhD, is the award award winning author of, Come Back Early Today: A Story of Love, Alzheimer’s and Joy. You can visit Marie’s website at ComeBackEarlyToday.
When I got home I did a little research on the internet. According to the NIH Lung, Heart 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 had published 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.”
I had also 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 had published still another article, “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 knowing it probably isn’t Alzheimer’s.
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