Sometimes, after I finish spluttering at being unable to find the right word, I ask my companion to help me find the word and I proceed to describe in detail the object or situation the lost word means. It is always some common word and it is easily picked out by a brain not being destroyed by Alzheimer's. It has been difficult for me to resort to this method of communication, but there is little else I can do. In this way I have learned to carry on a peculiar dialog with the world and my fellow human beings. My conversation with the world, in person or through this computer, has become something like a game show or a Scrabble contest.
Grandma Davis lived alone in a two-story house in Eldora, Iowa, where my mother and my uncle, Amyer, grew up. Her husband, a lawyer, was killed by a man angry over a divorce settlement, and she raised the children alone, living on the rent of two farms she
THOMAS DeBAGGIO
owned in the upper Midwest. During the Great Depression, she served as a house mother at Grinnell College while my mother studied to be a teacher.
The house was large, with four bedrooms, but that was only the beginning. There was a large library with a sliding door for privacy. It was filled with books and magazines behind glass. There was a big living room, and a well-appointed dining room. A huge kitchen was outfitted with an eating nook with painted wood tables and seats. Off the kitchen at one end was a narrow sewing room. All through the house were colorful hand-woven rugs made by the Indians in Arizona where my grandmother lived as a schoolteacher at the beginning of the twentieth century.
There was a curious place off the kitchen leading to the back door where there had been an old refrigerator. There was a special outside door to allow the iceman to put large pieces of ice into the refrigerator in earlier days. Pigeons roosted on the roof and contaminated the cistern, the source of water. The water turned yellow, so we always went to Grandpa DeBaggio's to bathe.
An upstairs room provided a clear view of the town clock atop the courthouse in the center of town. It counted the hours loudly and kept everyone aware of the passage of time. The clock tower was visible for miles across the flat land, a fixture I sought later when the family had a car and we drove to Iowa in the summer. Mary Ann and I strained to be first to view the happy sight of the town clock as my father's car neared the town. Eldora was a clean, dusted place in a calm world far from the secrets and fears rattling the East Coast.
Temptation is everywhere fueled by advice.
I spent most of my life in Arlington, Virginia, a sliver of land once considered for use as part of Washington, DC. It is a county without a city, George Washington's dream turned into a bedroom community.
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Before mv time, the coimt's high blutYs along the Potomac River offered an escape to cool breezes and lured sweltering cit' dwellers who built summer cottages. I remember as a child, there were signs of a rough past, remnants of its years as a home for farmers and boodeggers.
Arlington was changing fast as the 1943s opened, driven by an influx of government employees brought by FDR and the war. Children who went to school in the early days of the county traveled to Washington, DC. Later, in my time, we walked to the schools, many of them new.
By the time our family arrived, the railroad serving the count- for years, the Washington and Old Dominion, was on its last passenger legs, crippled by the automobile and the bus—gas guzzlers that accelerated after the war. The school system was about to undergo expansion with the end of the conflagrations in Europe and the Far East,
I
Paying income taxes became a major production several years ago. Personal income tax returns are complex enough, but with three additional business returns, we turned to professional help to understand it all. My happy fiscal stumbling during a routine compliance audit revealed I was no longer able to do my own taxes. The unfortunate pan of this is that none of our companies make much money. I sought wisdom and referrals and engaged a highly touted accountant. He did our taxes and saved us money. When I took our tax information to him the next year, we talked, and I mentioned that Joyce and I wanted to discuss financial aspects of our affairs with him because I had recendy been diagnosed with Alzheimer's. He told me his company had just begun selling insurance. He ushered me into a conference room so we could discuss the matter in private.
THOMAS DeBAGGIO
"Do you have insurance?" he asked after we were seated.
"No," I said. "Can you get insured for Alzheimer's.'^"
"How do you know you have Alzheimer's.^" he asked. I explained I had been tested and the doctors were as certain as they could be, but current testing had about a lo percent chance of failure.
"From what you have told me," he said, "it is difficult, almost impossible, to positively diagnose Alzheimer's. I think you should look at this on the bright side. When the insurance company calls and asks about your health, I don't think you have to offer them your own diagnosis. If doctors can't be absolutely certain until you are dead and autopsied, I don't see how you can be so sure."
He recommended insurance as a way to pay for nursing home care, which would make my last days more comfortable and less expensive. The way the discussion popped up made his eagerness to get me insured not unexpected, but what came next made me feel uneasy.
"After you apply for the insurance," he said, "the company will have an employee call you. I think you can truthfully tell them you are in good health. You have had some tests but they have not produced positive results. They will have to wait until you die and take a look at your brain before the doctors can be positive."
We got another accountant.
I am at the edge of uncertainty. I walk through my house where I have lived for over twenty-Jive years and I have the feeling sometimes I am in a motel, an unfamiliar place of transition.
In its early stages, Alzheimer's drug costs can be considerable. Thirty Aricept tablets retail for about $137 at the drugstore a few blocks from my house. As I write this, Aricept is the basic treatment for the disease, although there have been reports of improved medication on the horizon. It is fortunate I have heath insurance; I pay $10 per month.
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My first doctor also prescribed vitamin E (2,000 lU per day) and ginkgo biloba (240 milligrams daily) in addition to vitamin B. These over-the-counter drugs and vitamins have limited effects depending on the individual. Despite the costs, however, there is no cure; the medicines are used to slow the onslaught of the disease, not cure it.
Costs to Alzheimer's victims often start low and spiral as the disease claims more mental territory. The Alzheimer's Association estimates that the average cost for someone with the disease per year is between $42,000 and $70,000. This adds up to a lifetime cost of about $174,000 per patient. The cost to the police to find and return a lost, wandering person, a common occurrence with Alzheimer's, is estimated to be close to $30,000. The Alzheimer's Association estimates the annual cost of the disease in the United States at between $80 billion and $100 billion.
When I go grocery shopping inevitable questions arise in my mind now that were unspoken in the past. Instead of picking items off the shelves as I used to, I now pause before I drop them in a cart. I look at the item carefully and ask, "Is this the last I will need of this.'^" It is a question that would never have occurred to me a few months ago, before my life was shattered with the Alzheimer's diagnosis. It is almost as if I am counting the days until I die, as if I knew the precise date and time. Of course I don't have a clue when my demise will be but, until a few days ago, I was certain I was going to die of this silent disease in six to eight years, the figure estimated for the life span of a person with familial Alzheimer's, the type I most likely have due to its early onset.
Although the thought of death has a powerful influence on my thinking these days, a vaccine study in mice has given me hope. It was the first study showing potential of reversing the destructive behavior in the brain that is the hallmark of Alzheimer's. The scientists, working for a subsidiary
of Elan Pharmaceuticals, did this in a novel way, concocting a vaccine. The company's researchers used geneti-
THOMAS DeBAGGIO
cally altered mice so that they developed the plaque-like deposits commonly found in the brains of Alzheimer's patients, according to the New York Times. These deposits, amyloid plaques, are believed to cause cell death in the brain. When healthy mice were vaccinated, they grew up without developing the destructive plaques. The treatment eradicated plaques in diseased mice, improving damaged neurons. This was a strong scientific suggestion that the elusive cure for Alzheimer's may be found around the corner.
One day after finishing school at St. James, I stood outside the building awaiting my ride. Suddenly my mother drove up in a strange-looking car I later learned was a Nash. It was a big surprise to have a car, the first my parents owned, and I was thrilled. I sat in the front seat with my mother as she drove home. There was a wonderful tree-covered incline on Washington Boulevard, and when the car came to it, I rolled down the window and stuck my head into the car's wind. I opened my mouth and tasted the beginning of a new world.
Once born we cannot escape our humanity. We have one chance to leave a word or two, a single concept that is worth a dime. For all our puny hopes and dreams and sparkling ideas, we cannot escape the forever of the cold, cold ground.
Aliheimer's burns the familiar and turns the world into an uncertain, frightening place.
A constant focus on dying has preoccupied me the last several months and it cannot be good for me. I have tried to shake this unhealthy focus but I am led to it. The numbers are there in all the books and research on Alzheimer's. I am not proud of my descent into the arms of Alzheimer's and its effect on me spreads to those I am around. I am an unhealthy influence on the lives of those I love. I have to find a way to stop moping around with thoughts of death before me. I have always known dying was what life was about and
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old age represents a historic effort on the part of those who reach it. A conversation about the weather, these days, is often a welcome relief from the constant focus on my health and my own morbid preoccupation with death.
I awoke this morning disoriented from the surreal dream I occupied in sleep. My back was sore and my left arm ached. In the dream, I worked for a man who employed me years ago and now, instead of an art supply store, I managed a street corner bunker from which I retailed newspapers and magazines. It was the kind of place you see in big, rundown cities except it was made of concrete slabs, turned in all sorts of directions, creating a multiplaned cityscape. It was as if I had slaved there forever, and at the same time it was all new. I was helpless there and my mind moved from my body. The only activity in this street corner bunker was to rush in and out of the surreal pile of concrete and wave newspapers at passersby. Eventually pieces of the structure disappeared. The decline continued until nothing was left and the street corner was empty. What remained was my memory of it, and I awoke fearful. Would I lose even the memory of having worked there.'^
I got up to describe the dream. I rarely have dreams now, or remember them, and I had an overwhelming feeling I was in an unfamiliar place, although I recognized my house. Everything was disappearing around me, sliding into the earth. I was bewildered and lost. It was then the tears came and I choked on them.
Scientists, ethicists, and other health professionals joined together in October of 1995 to write a public policy statement about the appropriateness of apoE testing and the role of genetic counseling for Alzheimer's. Discussions leading to the statement took place at a conference in Chicago, Illinois, sponsored by the National Institute on Aging and the Alzheimer's Association.
THOMAS DeBAGGIO
The public policy statement supports the use of apoE testing as a patient screening method. Conference participants said that further research and agreements about confidentiality are needed before they will recommend routine apoE testing. - "national institutes of health fact sheet," 1999
I am breathless, choking with fear.
I wish I could say my memory loss came from having too much fun, but it doesn't seem possible; even overindulging in work doesn't rank as a cause. Bad luck gets most of the blame for what is happening to me and I don't know who to blame. The type of Alzheimer's I have affects about I percent of all those diagnosed with the disease and that explains why it seems so unusual for a fifty-seven-year-old man to have a disease that is more common among seventy- and eighty-year-olds.
I went to the local Alzheimer's Association office today. It is located in Fairfax County in a small high-rise building. I walked into the office, expecting a small, underused facility and discovered instead a bustling office with a large library. I wanted to look over the books for ideas and to see if any books had been written similar to what I had undertaken.
There were a lot of books but most of them were not written for the public in general, and I was happy.
I had not been in the office long before I met the woman who spoke with Joyce the day before. She was glad I came because she wanted me to meet their lobbyist, who was anxious to recruit people with Alzheimer's, and their families, to help his efforts in Richmond when the General Assembly was in session. I told him I was glad to help in any way I could. I won't be much of a poster boy for the Alzheimer's Association, but I hope I can show the legislators the disease is not always one of old age only.
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I
When you are very young, you fight food almost from the time you are weaned until you leave home. You know it is necessary to eat, but you like to pick your own food. In the high chair you throw it. At the dinner table you resist it. At lunch you toss it away. Kids always anticipate what parents want them to do and surprise adults with rebellious explosions. It is a wonder the young human body survives at all.
My mother's kitchen was a clean, safe place and it always smelled of apple cider vinegar. She used it on salads, of course, but it cleaned her pots and pans, as well, when a little salt was added.
She discovered the magic to keeping her family happy at the table. She cooked exactly what we wanted, even winning us over on meatless Fridays with deeply sauced, meatless spaghetti. My father did the fancy stuff of his Italian dreams. My mother stuck to the familiar, the food she discovered her children wouldn't throw on the floor. I adored orange and onion salad with French dressing out of a bottle. Hamburger nights were also favorites when the war was over and meat was more easily obtained.
My mother was without pretense in the kitchen and in life, a characteristic I still ascribe to the ways of mid-America.
^-.
One of the small pleasures of having any illness is the opportunity it provides to tell people about it. When there is something amiss in your life, your friends like to know and commiserate with you and this is as true of a cold as it is with something so overpowering and frightening as Alzheimer's. The support I have received has been overwhelming and I hope it keeps up. It is good to know your friends support you and will do almost anything within their powers to help. As word worked its way through the population of my friends and acquaintances, I noticed an uncommon desire to share cures. The offer of these cures is presented with kindness. I accept them
THOMAS DeBAGGIO
with warmth and I even try some of them. The heaUng advice is given with best intentions and most of it makes me smile. I do not believe in miracles and it does not bother me that I have a passel of friends who do.
The first outpouring of advice came from a well-meaning cousin who filled my mailbox with pages copied from numerous books claiming cures for Alzheimer's—from eating certain foods to exercising. Of course antioxidants are important to brain function and are contained in many foods; in fact they are part of the regimen recommended by physicians treating Alzheimer's patients, but they are not a cure.
Another friend gave me a copy of Paul Pitchford's phonebook-sized opus, Healing with Whole Foods. Whatever the problem, Pitchford has a cure based on e
ating some unappetizing food. Oriental medicine, or some unusual treatment. Ozone therapy is mentioned for use in Alzheimer's patients but it is not a cure, only a method to "improve brain function," according to Pitchford. He also blames toxic metals, especially aluminum, as a possible contributor to Alzheimer's.
A friend of nearly two decades sent me an interesting letter and gift after learning of my illness. The first object to drop from the package was a small bottle. On it were two words in large letters: "Lourdes Water." There was a picture of a supplicant and floating above her a representation of Mary. Under it was the source: "The Lourdes Bureaus, Marist Fathers, 698 Beacon Street, Boston, Mass. 02212."
My friend is known for his humorous mailings. This may have been lighthearted but I don't believe it was meant as a joke; the subject was too sensitive. The letter with the water informed me my friend's wife had a great-grandfather who had been a physician at Lourdes and helped certify miracles. A great-great-aunt of hers was in the same religious order as St. Bernadette and was present at her deathbed.
What does an atheist do with a bottle of Lourdes water, espe-
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dally when the wife of the sender is so well connected? Drink the water, laugh, and thank the giver.
The day the Admiral was scheduled to arrive was filled with excitement. In my young life, this may have been the most miraculous thing to happen, and it had few rivals even later. The television came in a big, heavy box almost as tall as me. As the layers of cardboard peeled away, the glow of polished walnut came into view. In the middle was a tiny glass bubble I learned to call a "screen."
It was a large piece of furniture four feet high. The viewing screen was dwarfed by the mass of polished wood surrounding it. The monument to modernity was wrestled into a place of honor at the center of the family room and all chairs faced it.
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