therestlessnest

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Archive for the month “January, 2015”

Why I Volunteer for Research, Part Two

QUIBRO_hires2Although 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, peered at with a penlight in my eyes. And there were psychological questions: On a scale of one to ten, do you usually feel life is worth living?

I was weighed and measured. I gave blood. I peed in a cup. My family tree was drawn, with special attention to anything that might be relevant: Grandma Cere’s Parkinson’s disease; Great Aunt Eine’s Alzheimer’s disease, which started in her seventies. I was approved for a lumbar puncture, more commonly known as a spinal tap, and a week later, I came back and curled up in a ball while two tablespoons of fluid were extracted from my spine with a long quivery needle: two tablespoons that would be turned into 50 droplet-sized samples for research. My husband filmed nearly all of it, from What day is it? right through the spinal tap. Later, we filmed interviews with four different doctors.

But for me, those first filmmaking visits to the University of Washington’s Alzheimer’s Disease Research Center (ADRC) turned into more than just clips for our documentary, Quick Brown Fox: an Alzheimer’s Story. It was the beginning of what has become a meaningful part of my life. I am a regular research participant. Every fall, the ADRC calls me in. Depending on what studies they’re running, they may ask me to undergo a spinal tap (I’ve done five so far), but mostly it’s memory and neural testing. Once, a different UW department asked me to take part in an Alzheimer’s study that required an MRI: a Star Trek-like experience in which I lay down on a sort of conveyor belt that slid me into a tube that took pictures of my brain.

Some people are surprised that I want to participate in research. They ask if I get nervous about the memory testing, and even though I don’t suffer from a general fear of test-taking, the answer is: given what’s at stake, of course I do. I breathe a lot as I walk into the VA on the appointed day; I pep-talk myself about how the best strategy is to stay calm. Once the testing starts, I try to relax into it and just stay focused.

But what if one year I don’t pass with flying colors? Sure, that’s a scary thought. But if it happens, wouldn’t I want to be in immediate contact with the top Alzheimer’s researchers in my city? Wouldn’t I want to participate in, for example, a drug trial for people in the early stage? Yes and yes. And meanwhile, given my high level of fear about Alzheimer’s, it is extremely comforting to know that I’m still a high-functioning control subject.

It is also important to feel like I’m doing something for the cause of ending Alzheimer’s. I don’t have large amounts of money to donate. But I do have small chunks of time that I can gladly give. And as long as I don’t have to change a tire or carry bear spray, I’m in.

Speaking of, wouldn’t it be great if employers gave people time off to volunteer for research? As a self-employed filmmaker and writer, this is not an issue for me, but for many people it is. And if we could step up the pace of research, would that not be a wonderful thing?

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!

HBBfinalcoverBuy Her Beautiful Brain from the small or large bookstore of your choice. Find a bookstore here. Order the Kindle version here.

 

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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.

Being Fragile

IMG_1380Human beings are fragile, though we prefer not to dwell on this. We prefer to celebrate our resilience, our strength, our endurance. But in the end, we are fragile, because we are mortal. Some living things—for example, the bristlecone pines of Nevada’s Great Basin—can live for a thousand years. Not us. Not a single one of us. Not ever. Unknown

Mortality is what Atul Gawande wrestles with in his book, Being Mortal. Gawande is a surgeon, and he is trained to fix broken humans so they can go back to being strong and resilient and busy. But when his own father was given a diagnosis that both father and son knew was incurable, Gawande realized how ill-prepared he and his parents—both also doctors—were to accept what medicine can’t do to fix things. And he realized he and his family weren’t alone in this. He began to look around his world, the world of surgery, oncology, all kinds of high-tech solutions to human fragility. He started asking hard questions about how and why doctors so often aggressively treat terminally ill patients—frequently causing great distress and discomfort—and why they so rarely ask questions about what their patients might actually want from life in their final years, days or months. He sought out people who were trying to do things differently, and learned from them how to ask the right questions. A piano teacher with, at most, weeks to live, told him what she most wanted was to leave the hospital, go home, and be given just enough pain relief to enable her to teach as long as she could. She got it, and in her last days, her students played a final recital for her in her house.

Gawande also takes a long look at what life is like in America for people who may still have years to live, but who have reached that most fragile phase of all: old age. He questions whether safety—the stated priority of most adult children, when they look for a place for their parents to live—should really be our number-one concern in housing the elderly. What about joy? Meaning? The dignity of privacy; the pleasures of community? Gawande tells the story of how one assisted-living residence was transformed when dogs, cats and 100 parakeets were brought in. He also looks at programs to help seniors stay in their homes by zeroing in on small things: finding someone nearby they can call to change a lightbulb, or take them grocery shopping.

It may sound like a tough read, and at times it is. I wish he had wrestled more with the emotional and ethical challenges posed by Alzheimer’s disease and other dementias. But Being Mortal is ultimately an uplifting book because Gawande seeks and finds examples of how we can do better at facing mortality: our own, and that of the people we love. His focus is on the medical end of the conversation, because, he contends, we have come to view old age and death as medical challenges. He wishes this was not the case, but given that it is, he wants us to think about ways to steer the conversation from what the intensive care unit or nursing home has to offer to what human beings nearing the end of life really need and want.

Gawande writes that he “never expected that among the most meaningful experiences I’d have as a doctor—and, really, as a human being—would come from helping others deal with what medicine cannot do as well as what it can.”

After reading Being Mortal, I felt less fragile. Less fearful. There’s something about facing fear head-on that does that, especially when you’ve got a good guidebook. 

HBBfinalcover

Buy Her Beautiful Brain from the small or large bookstore of your choice. Find a bookstore here. Order the Kindle version 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!

 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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