Friday, September 5, 2008

The real pain in the neck

The real pain in the neck
is not relieved by aspirin

We octogenarians ask ourselves a lot of questions because we’re running out of other people to ask. I peered down a long and familiar sidewalk in front of my condo, and asked myself whether a tree near the end of it was missing. Or whether my eccentric eyes were up to something.

Swerving off straight and narrow sidewalks, theater aisles or test lines on the floor of a neurologist’s office is one of the marks of a rare disease called olivopontocerebellar atrophy. I decided not to renew my driver’s license when familiar truss bridges, the kind with tall steel girders and beams, squeezed in on my car as I drove across.

Most of the people I know with this ailment, which we call OPCA, were not readily diagnosed. Most doctors never see a case. Some authorities say that it typically starts in men who are in their late 50’s, sometimes progressing so slowly that its symptoms look like something else. Eventually, with the help of the MRI (magnetic resonance imaging), a neurologist confirms an OPCA diagnosis.

The losses are not what textbook describe. Yes, there are gait problems, lurching, a tumble now and then. There’s a wispy kaleidoscope roiling around inside my head. Swallowing can be an adventure. But those are not the important losses in a long-term disease that still eludes a cure.

Grandson Matt has a baseball game. His brother Mike will be playing water polo. Katie will dance for the entertainment of family and pals. We live a mile apart, but OPCA trips me up in auditoriums with straight lines of aisles and squared-off indoor pools. Sometimes it seems like we’re a million miles from each other. Jacob lives half a continent away and comes for visits with his family, but his grandpa stays home. He might go berserk in an airplane, as he tends to do in a tubular MRA. There are no visits to family events with Jacob or his older cousins, Kristen and Dan, in the university two or three hours away. Two sons and their wives live a couple of time zones to the west, a daughter and her husband are near, and e-mail is a wonderful e-glue that helps keep folks together.

Friends, relatives and strangers are thoughtful and kind. They go on creating happy memories. They’re the medicine that turns discomfort into comfort. They overlook the fact that OPCA sometimes takes memory away, or diminishes it, or even embellishes it.

A couple of years ago I wrote a little book, The Dizzy Disease, for newly-diagnosed OPCA patients and their families. Just the other day I pulled an unfamiliar notebook out of a desk drawer. What could it be? I was astonished to find the original draft of the book, much more useful than what was published. I had written it and forgotten it. Sometimes I find an article long-stored in my computer, nearly finished but awaiting a conclusion that never came because the project just drifted away into OPCAland.

I don’t think I’ll ever forget my wedding anniversary or certain birthdays. It may take a moment to remember my phone number, but I’m able to answer Jeopardy questions and I know where everything is in the hardware store. As for that missing tree at the end of my sidewalk, it had been blown over and hauled away.

OPCA blurs some memories, erases some, and stirs up pains no prescription can wipe out. The loss that hurts most is time shared with family and friends.

1 comment:

willem biedermann said...

I think your blog is outstanding. Always interesting and very hopeful in regard to OPCA.

Just a great website!