Category: Living with Brain Damage

There’s a thought-provoking article from Associated Press on the wire this week: Alzheimer’s debate: Test if you can’t treat it?

The gist of the debate is this: with today’s more sophisticated tests–such as the diffusion MRI–it’s easier for doctors to identify brain damage (in the form of plaques) that might suggest someone is developing Alzheimer’s disease. But the treatment options are limited and not terribly effective.

Some doctors urge more and earlier testing, believing it will lead to more effective treatment, both for patients who are shown to be developing Alzheimer’s (by starting treatment earlier) and for those who are not (by allowing both doctor and patient to focus on other possible causes and treatments).

Other doctors say there is no evidence that earlier diagnosis leads to a more favorable outcome and they worry about the costs of widespread early testing. Some patients worry what a test showing brain deterioration, even without symptoms, might mean for future employment, insurance or even senior housing options.

This story hit home for me on two fronts. After a couple of recent episodes that seemed more serious than “senior moments,” my 84-year-old mother is being sent by her doctor for tests this week. And, as a patient with an already-damaged brain from my stroke, I realize that I’m at higher risk for developing Alzheimer’s myself.

I’m squarely in the “I want to know” camp, both for my mother and myself.

My mom lives independently, alone, in a retirement home with good services and a great medical staff. She has resources in place, with help from my sister and me, to navigate occasional choppy waters of forgetfulness and confusion–those “senior moments” that seem to multiply with the years.  But if there’s more to it than that, we all want to know. My sister and I will need to plan for the more intensive care she’ll need. More important, Mom can direct the decisions. If Alzheimer’s is likely, I want Mom to have her say while she still can.

And for me, there’s no question I’d want to know, as early and in as much detail as science allows.

The most terrifying moment of my life came on the morning of my stroke when I felt my mind slipping away, my thoughts scattered like dandelion seeds in the breeze.

“My mind was like cotton candy, everything I’d ever known obscured in a swirl of sticky pink sugar.”

-Excerpt from A Stroke of Bad Luck

I won’t ask to be tested anytime soon, and not without a good reason. My days are already woven with orange-juice-in-the-microwave, hair-gel-on-the-toothbrush moments, courtesy of brain damage from my stroke. These “synapse lapses,” as I like to call them, increase with fatigue, stress, with illness, then taper down when I’m feeling well.  I’ve come to take them in stride. On most days, there’s more clarity than chaos, and that’s enough for now.  But if things should get worse, you betcha I’ll want to know what’s gong on, PDQ.

How about you?