therestlessnest

where life's not empty, it's restless.

Why I Volunteer for Research, Part One

EndAlz

Here are two of the many things that scare me: having to change a tire all by myself (because I’ve never done it) and camping in bear country (because I have). Here are two of the few things that don’t scare me: taking pop quizzes and getting poked with needles. These slim categories of fearlessness make me a natural volunteer for Alzheimer’s research.

My mother grew up in Montana and nothing much scared her. She not only changed tires, she put chains on tires by herself, tying them together with shoelaces if they didn’t fit right, lying under the car in a snow storm. As for camping, after a twenty-year hiatus, she decided to try it again—solo, with four children in tow. We didn’t see any bears. The worst thing that happened was that we forgot spoons for our cereal. The best thing was being with Mom, far away from all of her city responsibilities, laughing along with the rest of us as we slurped our Raisin Bran and milk from our cups.

Mom was the kind of person you would put last on your list of People Likely to Get Alzheimer’s disease. She was smart and lively and fit; she taught high school English and read like crazy; she weathered two divorces and the loss of her third husband and raised six kids alone. But somehow, Alzheimer’s found her, and it found her early. She was in her late fifties when she suspected something was wrong, was finally diagnosed at 66 and dead at 74. Meanwhile, my siblings and I were marrying, raising kids, building careers and trying to help her cope with this awful hand she’d been dealt. (You can read about it in my memoir, Her Beautiful Brain.HBBfinalcover

What was so frustrating, of course, was how little we could do for our mother. Medicine offers no antibiotic, no chemotherapy, no surgery or drugs beyond a few pills that might slow the progression of dementia. We could give her our time, ourselves, the joy of grandchildren, the pleasures of a walk or chocolate or music. What we could never give her was our sorrow and rage about Alzheimer’s. So what could we do with those emotions?

One answer I found: volunteer for research.

For me, it started by accident. Twelve years ago, I looked up the University of Washington Alzheimer’s Disease Research Center (ADRC) in the phone book (remember phone books?) and gave them a call. I was seeking scientists to interview for a documentary about Alzheimer’s disease. But the administrator surprised me with a question of her own.

“Why don’t you volunteer for research?” she said. “As a control subject. It could be part of your film.”

QUIBRO_hires2And so, as I wrote in my book, I found myself in a room at Seattle’s huge VA Hospital, where the ADRC is located, taking all the memory tests I’d watched Mom flunk. The tests start with questions like, What day is it? Who is the president? and progress through tasks like spelling WORLD backwards, listening to a paragraph and recalling details ten minutes later, repeating back sequences of numbers, remembering short lists of words, distinguishing the words for colors from the actual colors, going back to that paragraph and recalling it again, going back to those numbers and doing the sequences in reverse order.

Despite my test-taking bravado, was I nervous? You bet. Am I glad I did it? Definitely.

To be continued…

Note: I wrote this post for the Alzheimer’s Association’s brand-new regional blog: check it out here. 

 Registration is open for Introduction to Memoir Writing at Seattle Central College. Starts February 11, 2015. Six Wednesday nights. Non-credit = all inspiration, no stress!

 I’ll be reading from Her Beautiful Brain at Ravenna Third Place Books on Thursday, February 12 at 7pm. You can pre-order it from Third Place or from the small or large bookstore of your choice. Find a bookstore here. Order the Kindle version here.

 Radio lovers: you can hear the Restless Nest commentaries every Tuesday at 7:45 a.m. on KBCS, streaming online at kbcs.fm and on the air at 91.3 in the Seattle area. Podcasts available too.

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