At the Edge of the World

2019-11-07T15:31:55-08:00Categories: brain, dementia, feminism, politics, Uncategorized, women's rights, writing|Tags: , , , , , , , , |

            This is where I am: on the sandy, foamy, whitecapped edge of America. Last time I visited this beach, I wrote about the epidemic of earthquake fear then sweeping the Northwest, following the July 2015 publication of ­­­­­­­­Kathryn Schulz’s New Yorker article, “The Really Big One.” Maybe it’s just as well to be out on the wide-open Washington coast when the big one hits, I speculated. It would all be over pretty quick: one big, obliterating tidal wave. Boom. And here I am again, feeling like the Big One did just hit us. It didn’t wipe us out. Yet. But it shook us to our core; challenged assumptions we’d held for months; changed the way we see ourselves and everyone else. Now we’re all rummaging through our psychic wreckage for salvageable scraps of energy, optimism, drive. We’re sorting useful anger from destructive anger. We’re demanding of ourselves that we learn to understand the people we quite recently referred to as Haters. We’re exhorting each other to eat, sleep, exercise, hug and read about a hundred articles a day. I have been reading a lot, and I’m sure you have too. Here are a few post-election essays I’ve found really useful: Dame Magazine's Don’t Tell Me to Calm Down, by Heather Wood Rudúlph ; Rebecca Solnit’s essay in The Guardian, Don't Call Clinton a Weak Candidate, and, for when you’re ready to stop keening and take constructive action, New York Times' columnist Nicholas Kristof’s A 12-Step Program for Responding to President-elect Trump. But I’ve also been thinking often of Hillary [...]

My media adventures

2019-11-07T15:43:29-08:00Categories: brain, dementia, health & medicine, memoir|Tags: , , , |

Alzheimer's disease is so hard to talk about. Or write about, or make films about. But here's what I'm learning this summer: focusing on volunteering for Alzheimer's research is somehow easier, and if it's a way to get people to talk about this deadly illness that now affects 5.3 million people and costs our country $226 billion a year, then I'm willing to do it. And if you actually saw me on Fox News' Health Talk and you're inspired to volunteer for research, here's the Alzheimer's Association's Trial Match page. Go for it! As I wrote about earlier this summer in the Wall Street Journal, you will feel more useful than you ever have in your life. I am forever grateful to Dr. Manny Alvarez and his wonderful producer, Paula Rizzo (check out her lively website and book on productivity, Listful Thinking) for inviting me to share my experiences on Health Talk. I'm still taking in the crazy whirl of it--lights, camera, makeup--but hoping, more than anything, that a few viewers are persuaded to volunteer. I volunteer for my mom. But I also do it for myself, and my children, and their future children.  And for the millions of people, worldwide, who are living with Alzheimer's now, or will be someday soon: unless, that is, there's a research breakthrough. Which is more likely to happen if more research volunteers step up. Remember, you don't have to have Alzheimer's, or have it in your family; control subjects are always needed. Buy Her Beautiful Brain from the small or large bookstore of your [...]

Why I Volunteer for Research, Part Two

2019-11-07T15:55:37-08:00Categories: brain, dementia, family, health & medicine, midlife|Tags: , , |

Although 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 [...]

Why I Volunteer for Research, Part One

2019-11-07T15:56:11-08:00Categories: brain, dementia, health & medicine, midlife, writing|Tags: , , , |

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. [...]