John Thorndike | The Last of His Mind |

Archive for October, 2010

Sandra Day O’Connor and Research Budgets

Friday, October 29th, 2010

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Interesting Op-Ed piece in the New York Times yesterday by Sandra Day O’Connor, the Supreme Court Justice who retired to look after her husband, plus Stanley Prusiner, the director an institute of neurodegenereative diseases, and Ken Dychtwald, a psychologist and gerontologist.

The usual stats were called up about the increasing prevalence of Alzheimer’s disease, the effect on the baby boomers, and the increasing financial burden this will impose on the country. But this stood out: “As things stand today, for each penny the National Institutes of Health spends on Alzheimer’s research, we spend more than $3.50 on caring for people with the condition.”

As the authors point out, “Experience has taught us that we cannot avoid Alzheimer’s disease by having regular medical checkups, by being involved in nourishing relationships or by going to the gym or filling in crossword puzzles. Ronald Reagan suffered the ravages of this disease for a decade despite the support of his loving family, the extraordinary stimulation of his work, his access to the best medical care and his high level of physical fitness. What’s needed are new medicines that attack the causes of the disease directly.”

Medical researchers have been working on dementia medications for decades, but few have been approved, and so far, “these can only slightly and temporarily modify symptoms like forgetfulness, disorientation and confusion. None actually slows the underlying neurodegeneration.”

Whereas the The National Institutes of Health spent over $10 billion on developing
AIDS medications—and still spends $3 billion a year on AIDS research—““Alzheimer’s, with five times as many victims, receives a mere $469 million.”

The authors are more sanguine than I, but I hope they’re right when they affirm that “Medical science has the capacity to relegate Alzheimer’s to the list of formerly intractable diseases like typhoid, polio and many childhood cancers. But unless we get to work now, any breakthrough will come too late to benefit the baby boomers.”

Hey, that’s me.

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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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The Amazing Aging Mind

Sunday, October 3rd, 2010

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The Web is wide, and I miss things. Here’s a blog I’m happy to have recently discovered. It’s astute, lively and beautifully-written by Marty D, who with her sister has been looking after “a mother with end-stages Alzheimer’s and a father with (as far as the docs can tell) Parkinson’s disease.” (Their father, in fact, died just over a month ago.)

I found Marty D’s entries so engaging I went back to her archives and read every entry from last April until now.

Here’s a passage that made me sit up:

“Whenever I see Mom sitting alone, it kills me because she looks so terribly alone. So I go sit with her, and on a good day—most days—she is riveted with my presence. But the second I leave her sight—to fling clothes from the washer to the dryer; to use the bathroom; to make a cup of tea—she is completely alone again. And in those moments—from her perspective—she has always been and always will be alone. There is no memory of my having been in her presence all morning other than a few moments of necessary ‘productive time.’”

And this one, in which she describes a verbal exam given by a social worker to assess the author’s father:

“The list of questions issued were designed to find out exactly what Dad can and cannot do for himself. The fact that Dad can’t do much at all for himself is something we try not to throw in his face even as it happens. Every time Dad can’t sit in the chair correctly and a struggle ensues to find the right verbal or physical cue to help him do so, Dad’s self-esteem takes a dive. Every time he can’t find a certain room in the house… can’t tell time… etc. So when a list of questions comes along and lays out each and every one of his deficiencies in one sitting, piling them up in front of him like so much garbage to be hauled around, well, it would be an understatement to say it was humiliating.

“The further we got into the questionnaire, the more Dad’s countenance fell. It got to the point that I let Dad tell the social worker that he had no problem doing x or y or z, even though I knew the truth.

“We ended up somewhere between the truth and Dad’s dignity, honoring neither.

“At the very end, this wise social worker asked a question that was clearly not on the list. She asked, “Do you like to fish?”

“You could see the dark cloud lift from over Dad’s beaten-down self! A tiny bit of affirmation in the midst of all that pummeling! Never mind that Dad can’t do it anymore; the question at least allowed him the pleasure of showing a positive side of himself. For once, he got to answer a very truthful ‘yes!’”

This description reminded me of my own father’s humiliating evaluation by a neuropsychologist. “When the questions are over,” I wrote afterward, “Dad hobbles into his bedroom and lies down. He’s flattened, and immediately goes to sleep…. Later, I sit alone in the darkened house, slumped in Dad’s chair. What a misery, this disease.”

I’ll read anything Marty D writes. She’s cogent, clear and inventive. Bravo for her blog so far.

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