Hard to Forget

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  • Edition: Large
  • Format: Hardcover
  • Copyright: 2000-11-01
  • Publisher: Thorndike Pr

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In this remarkable book, Charles Pierce intertwines two dramatic stories -- the scientific race to discover the causes of Alzheimer's and the moving experiences of the Pierce family as they struggle with the disease. More than four million Americans develop Alzheimer's every year, just as Pierce's father did. Here he takes us deep into the country of this disease, from Dr. Alois Alzheimer's work in the early twentieth century to Watson and Crick's discovery of the double-helix structure of DNA, which opened up the field of research and led to discoveries of Alzheimer's genetic components.

Table of Contents

Preface 9(19)
Prologue: The Waking Dream 19(28)
John's Long Ride
Moving In Country
Mendel's Xylophone
The Genome Cowboys
The Brains Down the Hall
The Good Daughter
Brothers and Sistes
The Friday Group
Epilogue: Gatherings
The Big Hoedown
The Oldest One Standing
Acknowledgments 318(7)
Notes on Sources 325



Early one morning, in a sunstruck little town in the eastern part of North Carolina, I climbed on a blue and rusting school bus. I rode with a woman named Iris Bowen and another woman named Sharlene Brandt. Iris drove. I sat behind her, going airborne on every turn no matter how carefully she drove along the tight country roads. The bus slowly filled with the people whom Iris drove every Friday to a group meeting at a recreation center next to some weedy old railroad tracks.

We picked up Lillian Deggins, who said good morning to me and asked Sharlene Brandt how long Sharlene and I had been married.

We picked up Fannie Beach, who did not trust the woman up the road.

We picked up Miss Bee Thomas, who did not trust any of us, period.

The disjointed dialogue on the bus was in a language once familiar to me, a language that I'd only partly forgotten. In 1985, my father became one of four million Americans with Alzheimer's disease. Eventually, his three brothers developed it, too. It killed all four of them. It is said by people who know that approximately fourteen million people will develop Alzheimer's by the middle of the next century. My son may be one of them. My daughter may be another. I will not be one of that fourteen million because right now, today, like my aunt, I may already be one of the four million who have the disease, although there are no signs of it in me yet.

It helps me to look at the disease as a country now-a place to be explored, with paths to follow through shadows and fog toward the dim light of a distant morning. Some of these paths are old. Some of them are newly cut through regions of the country only recently discovered. I have not come to this place easily. It can be argued rather successfully that I did not come to it until long after my father died, and all of his brothers had become ill with the same disease.

There is an alternate reality to our family disease. If all the world is a stage, then Alzheimer's is a burlesque magic castle, with trapdoors and mirrored hallways, and staunch absurdity governing private universes. Characters suddenly appear, completely imaginary, but real as rain to the people with the disease. My father once created three new sons in my place. My Uncle James thought the Holy Cross football team was living next door. New twists in the plot occur almost daily. My father and my wife went on many walks together. On some of them, my father would determine that my wife needed a new car, so he would climb into one belonging to one of his neighbors and attempt to drive it away.

Some of it seems so funny now-Beckett squeezed through some dimensional wormhole codesigned by Ray Bradbury and the Marx Brothers. My wife gladly accepted the cars he offered her on their walks together. She leavened the tragedy by accepting the fundamental laws that governed my father's alternate reality. For me, well, hcll, I knew that he had no sons except me, and that the members of the Holy Cross football team were happily living on campus. I clung to an empirical reality that no longer existed for the person to whom it once belonged, and that is how a family disease can become a family curse.

"Here be dragons," the old cartographers warned, and everyone believed it, so they stayed where they were. Then one day someone decided to set out in their boat and look the dragons in the eye, and it turned out that the places where the dragons be was only Long Island. I had my own dark places and I believed in the dragons. Finally, I went there to see what I could find.

Throughout the 1980s, when I first encountered it, Alzheimer's already was a hot disease. By the end of the decade, 54 percent of the respondents in a poll sponsored by the Alzheimer's Association said they'd first learned of the disease through the media. Research money follows that kind of publicity, and science follows the research money, and we specimens follow the science. I can spot the disease peripherally now, out of the far edges of the newspaper page, while ostensibly perusing the box scores.

One day in August 1998, I caught a story about a mutation on a gene with the arcane name of A2M-2, located on the short arm of chromosome 12. This gene, said a scientist named Rudolph Tanzi, might predispose people to a form of late-onset Alzheimer's. This was in conflict with an earlier discovery at Duke University concerning a gene that produced a protein called apoE 4.

I called Tanzi, and he told me that A2M-2 was a genuine breakthrough. I called some people I knew at Duke, and they told me they hadn't been able to duplicate Tanzi's results. I knew that Tanzi and the Duke people had been at odds for nearly five years. There would be a fight over this A2M-2. I knew, and I knew it because I went out to look where my fear once told me dragons were.

Here be dragons. There are millions of genes settled along twenty-three pairs of human chromosomes, and genes on five of the chromosomes have been linked to Alzheimer's disease. Two of them appear to be what are called "susceptibility" genes-if you have the unfortunate genetic combination, you are at a higher risk for developing the disease. The other three are more definitive; given the presence of any one of these three mutated genes, the disease inevitably will appear. The progress in understanding the human genetic structure is headlong. Why we are what we are. Why we do what we do. Why some of us get Huntington's disease, or cystic fibrosis, or Alzheimer's. These are the mechanics, subtle and inexorable, of a family disease.

Here be dragons. So, I went off to Osaka in Japan because the best geneticists had gathered there to discuss the primal mechanisms by which Alzheimer's disease moves through families. Allen Roses, a bearded renegade from Duke University, was there. So was Tanzi, from Massachusetts General Hospital, nearly electric with his ambition and Roses's great foil in Alzheimer's research. So were Margaret Pericak-Vance, short and feisty, who worked down the hall from Roses at Duke, and Jonathan Haines, who worked upstairs from Tanzi at MGH. They were two younger researchers, trying to make their own careers without getting completely caught up in the furious rivalries raging down the hall, up the stairs, and at the top of their field.

Mike Conneally, who taught both Haines and PericakVance, came from Indiana University, and he tried to get everyone to get along, and from Toronto came Peter St. George-Hyslop, a gentle, brilliant man whom almost everyone admired. Unruly as a bag of cats, and suspicious as pickpockets at a hanging, they have flung their science so far forward that the law is not yet able to regulate it, nor is society able to give it context. It exists alone, in a rarefied place-waiting for the law and society to catch up, and creating as it waits a culture of potential disease in which people find themselves shadowed by illnesses that they do not have but might eventually develop. Losing the car keys becomes a much more serious matter for some people than for others. Each loudly trumpeted scientific breakthrough affects something in the practical business of daily life, even in those people who don't have the disease but who expcet that they might some day. Lives are lived on two tracks-what is, and what might be-and the tracks are not parallel. They intertwine.

In 1953, when James Watson and Francis Crick discovered the structure of the DNA molecule, breaking the essential code of the human species, they maintained that DNA was structured as a double helix: two spirals coiled together, a design which in architecture uses the corresponding strength of two strong spirals at the top of a pillar to support a roof.

There is a similar dynamic at work in understanding genetic diseases like Alzheimer's. A gene produces Alzheimer's disease, which in turn produces a need for day care and respite care. It produces a story that begins when a man disappears, and continues through everything that happens to him afterward. Two elements spiral togethertheory and practice-until it seems that one cannot exist without the other. Genes produce not only life, but a life.

We see the genes only when they've done their work, when the disease appears, and someone goes off into sweatsuits and oblivion. They disappear for days. They freeze in place. They die. The disease lingers. It hangs on the generations like moss on trees. These are the mechanics, subtle and inexorable, of a family curse.

There is no cure for Alzheimer's. If my chromosomes quiver in the correct patterns, I will get the family disease. However, there are cures for the family curse, and one of them is to chart the place where the dragons are said to be, every inch of it, and to see that there really are no dragons there. Tragedy and heartbreak, yes, but people are living there, following paths that lead to a kind of peace. I did not know this for a long time, not until after my family disease had become a family curse. I had my own dark places, and I believed in its dragons. Almost too late, I went out into those dark places to see what I could find.

People live in different parts of the country of my disease. Some of them have the disease, and some of them are simply affected by it. Some of them work in laboratories on the fringes of modern science, looking for the fundamental cause of the disease, and some of them work in recreation centers deep in the piney woods, talking quietly to those people in whom the gene has begun its dreadful work. Some of them live together in convents and some of them live apart from the world on windswept farms, where it is said to be against God's law even to own a telephone.

Here be dragons. So I went not only to Osaka, but also to a convent in Wisconsin and to a farm in the Amish country of Indiana, both places to which the scientists had come to study how the disease moved through communities after it moved out of the genes. I sought out an old ophthalmologist in Illinois, who so carefully chronicled the devastation the disease had wrought over five generations of his family that Peter Hyslop was able to find the gene that created so much wreckage. This man's family doctor was also my fathcr's doctor.

I went out into the country of my disease and people were living there still, and so I found myself living my own story again, with Hyslop and with Roses, with the nuns and the Amish. My story, my family's story, began to entwine itself with what I was learning about Alzheimer's until what I discovered became inseparable from what I had expericnced. I went out into the country of the disease, and I found myself coming home again.

And one day I got on a bus in a sunstruck little town in the eastern part of North Carolina, and I heard in the broken, roundabout sentences a common language. Lillian Doggins asked me how long Sharlene and I were married, and Miss Bee Thomas told me that I better not even think about sitting next to her. I bounced and rattled as the bus took the corners.

"Y'all all right back there?" Iris Bowen asked me.

I'm fine, I told her, and I smiled at Miss Bee Thomas, who did not smile back.

Copyright © 2000 Charles P. Pierce. All rights reserved.

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