Thursday, July 14, 2011

Alzheimer's: Going for the Test, Awaiting the Result

Mom struggled to get onto the table and lie down as the CT technician instructed. After positioning Mom’s head just so, the technician escorted me out of the room, went to her command station and began flipping switches.

I watched with mixed feelings from the hallway as Mom moved forward on the conveyor through the center of a giant-sized, donut-like machine. The machine slowly circled around Mom’s head dragging red rays of light with it.

Should I be doing this? What’s the point? Is this needlessly hard on her?

At my request, mom’s physician, Dr. Rudyard Dimson of Clinton Township, ordered a set of tests to try to determine if Mom’s dementia is related to Alzheimer’s or something else.

We went to Henry Ford Macomb Hospital for blood work, a urine sample and a CT brain scan. While it wasn’t a grueling set of tests by any means, I understood the reluctance of families to have their loved ones tested. Intellectually, I believe it has to be done.  But emotionally, it’s a different story.

"The mental anguish of living with a diagnosis would most certainly be as debilitating as the disease itself; especially if it was wrong. Sometimes, ignorance is bliss," wrote a reader in response to a recent New York Times article on advances in Alzheimer ‘s research.

One of my sisters expressed the same sentiment when I asked what she thought about having Mom tested.  I was persistent: “It could very well not be Alzheimer’s,” I said. “The dementia could be related to her weak heart.”

So the day before leaving for our up north July 4th weekend, I wheeled Mom from one end of the hospital to another in search of answers.

I learned through discussions with the knowledgeable (and compassionate) people manning the Alzheimer’s Association help line that the disease cannot be definitely diagnosed until after death when the brain can be closely examined for certain microscopic changes. (24/7 Helpline: 1.800.272.3900; e-mail: info@alz.org  www.alz.org.)

Rather, it’s a “diagnosis of exclusion.” Tests are ordered to rule out other problems that can cause the symptoms:  inactive thyroid, vitamin B-12 deficiency, malfunctioning kidney, stroke, mini-strokes.

CT scans can show certain changes in the brain, such as a reduction in size, that are characteristic of Alzheimer's disease in its later stages.

And the “Heart-Head Connection” is also to be considered, according to the Alzheimer’s Association.

“Some of the strongest current evidence links brain health to heart health. Your brain is nourished by one of your body's richest networks of blood vessels. Every heartbeat pumps about 20 to 25 percent of your blood to your head, where brain cells use at least 20 percent of the food and oxygen your blood carries.

“The risk of developing Alzheimer's or vascular dementia appears to increase as a result of many conditions that damage the heart or blood vessels. These include high blood pressure, heart disease, stroke, diabetes and high cholesterol.  Some autopsy studies show that as many as 80 percent of individuals with Alzheimer's disease also have cardiovascular disease.”

Mom has a very poor heart. We’ve know that for some years. To walk across a room without oxygen leaves her breathing heavy, trying to “get some air,” as she says.

Yet, her ability to walk seems to improve at inopportune times. The middle of the night, for instance.

During our July 4th family gathering on the Rifle River in Arenac County, cousin Joan heard sizzling coming from the kitchen at 3:30 in the morning. She ran up the stairs to find my mom with a frying pan filled with oil and the gas on high. Mom was making herself an egg.

So many feelings ran through me when Joan retold the story later that morning. Frustrated, angry, sad, ashamed and afraid.

Many Alzheimer’s studies are focusing on genetics and are coming up with a link. “Genetic research has turned up evidence of a link between Alzheimer's disease and genes on four chromosomes. . . a gene on chromosome 19 has been linked to late-onset Alzheimer's disease, which is the most common form of the disease,” according to the organization.

As I await Mom’s results, I think about why I wanted the tests in the first place. Tina, the Alzheimer’s Association help line expert, put it this way:

“The number one risk factor for Alzheimer’s is age. The number two risk factor is family,” she said. “If your parent or sibling has it, your chances go way up. We want to know because we want to plan. But also, because when they find the vaccine, we want to be first in line.”

n  Anne Marie Gattari, am.gattari@brightstarcare.com ; brightstarcare.com, 586.279.3610

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