John Thorndike | The Last of His Mind |

Posts Tagged ‘john bayley’

Deluge of Information

Monday, October 18th, 2010

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Alzheimer’s is an industry. Every day I receive notices of panels, commissions, double-blind drug studies, memory walks, research into tau and amyloid-b plaques. From the White House, Preparing the Nation to Better Address The Challenge of Alzheimer’s. From eurekalert, New Findings on Iron and Alzheimer’s. From reutershealth, Mental Acuity Not Linked to Calcium, Vitamin D. From USAgainstAlzheimer’s, Voters Want Congress to Make Alzheimer’s a Priority. From UCLA, Neuroscience Research May Help Patients Recover from Brain Injury.

All those, and several others, came from a single day’s reports at Alzheimer’s Daily News.

I’m glad of the seemingly-vast research being done on this disease. Even more is needed, I’m sure. As Maria Shriver and the Alzhehimer’s Foundation reported last week, “With the baby boomers entering their mid-60s, an Alzheimer’s tsunami is about to hit, with the number of people with Alzheimer’s disease expected to triple, reaching as many as 16 million by 2050.”

The devastation of the disease is vast, and so is its medical complexity. The debate rages about causes and possible cures—and every day more people tumble into the hole of memory loss, language loss and the loss of the self. And tumbling beside them are their caregivers, and they suffer as well.

Since the time I was living with my father and taking care of him, I’m sure a thousand medical studies have been done on Alzheimer’s and other dementias. Even at the time there was plenty to read on the Web—but for most hours of those days, seven days a week, I was busy with my dad. When I could, I read books. I read David Shenk’s great biography of Alzheimer’s, The Forgetting. I read pieces of the meaty, practical advice in The 36-Hour Day. I read only a little about the drug research, the trials and animal studies.

What I had to read were the personal stories of people who had been through the chaos and disaster that was engulfing both my father and me. It was memoirs I wanted. Well-written, poorly written, I tracked them down and read every one I could find.

Today there are more of them. Hundreds, perhaps thousands, now that self-publishing is so common. But those early memoirs saved my life, or so it felt. Eleanor Cooney’s Death in Slow Motion was the first, and it brought me to my knees. Then John Bayley’s exquisitely-written Iris, An Elegy. And the the most adroit of them all, with insights on every page, Aaron Alterra’s not-very-widely-known The Caregiver.

It was my response to those books that made me think I had to write my own memoir. I read and read, then I wrote and wrote.

Under Other Alzheimer’s Memoirs on the sidebar, you’ll find two dozen reviews of the books that moved me.

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