Why I Volunteer for Research, Part I

by Ann Hedreen

Ann Hedreen author photo copy

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.)

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.”

And 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…

Ann Hedreen is an author (Her Beautiful Brain), documentary filmmaker (Quick Brown Fox: an Alzheimer’s Story) and a longtime volunteer for Alzheimer’s research. She and her husband/filmmaking partner Rustin Thompson are both Northwest natives. They live in Seattle.

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7 comments

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

  2. Reblogged this on Baby Boomers and More and commented:
    In this particular instance, the thought of being a human guinea pig feels very, very comforting. Being able to help find a cure for Alzheimer’s that goes beyond monetary contributions sets up a legacy for many after Ms. Hedreen.

  3. […] being a control subject in Alzheimer’s research studies involves plenty of memory tests, there are neurological tests too. I was tickled with feathers, tapped on the elbows and knees, […]

  4. […] need more research subjects for research each year and people like author Ann Hedreen are stepping up to help find a cure. Learn how the Alzheimer’s Association can help you […]

  5. Debbie B · · Reply

    I’ve had the pleasure of being the research nurse for two of Ann’s visits to the UWADRC. Ann is so bright, thoughtful, frank, funny, and so engaged in life. The book reviews sound wonderful. I’m buying it now and hope many people will read it. Alheimer’s Disease and other dementias are so common, that all of us know and love someone who is dealing with the disease – in themselves, or in a friend or family member. I know that I learn something that helps me be more understanding and compassionate from so many books and articles, and from my patients and their families. I know I will enjoy this book, and will be enriched by it.

  6. Thank you so much for your kind words, Debbie!

  7. […] that participate in research and share their experiences so openly with us. Brian Whitney and Ann Hedreen are two of the many Washingtonians advancing research for a […]

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