More recently Rob has worked with a large pharmaceutical company and I thought he might help me get in touch with companies with drug trials about to begin on Alzheimer's. Within a couple of days he and his computer uncovered a wad of trial studies, most performed locally at the National Institutes of Health. As I read through them, it became obvious it was going to take a lot of time as well as some risk. Most trials required at least a three-day hospital stay, presumably a check-in day to prepare, a second day during which the experimental drug was ingested, and a third to watch for any immediate side effects of the drug.
LOSING MY MIND
There were personal risks, but more important, it took a lot of time. I had a job to go to and plants to husband. I began the book to expose my inner self in words from the deepest cavities of my being to help people understand the large picture of Alzheimer's, as well as the very personal one. I decided the book was more important. It had a potentially larger impact on public awareness. I felt more comfortable with words than with doctors and scientists.
Writing sometimes becomes difficult. Words vanish before they reach the page. Most of the time the biggest drawback is my plummeting typing accuracy. So far there are few words the spell checker cannot correct.
My first barbershop haircut ended in screaming, squirming, and tears. After that experience, my father took over tonsorial matters for the next eighteen years. His greatest challenge came with the flat-top craze. He had trouble cutting hair so it stood up to plateau evenly. He eventually cut his own hair with a razor comb. After Joyce and I married, she cut my hair.
I needed no university. I learned from pebbles.
I do not want to succumb to this illness but I am powerless in its clutches. Words come when I sit down to write, but they dance away seductively, and meaning and substance disappear quickly. Of course, this is not new; such things happen many times, but before they were retrievable and now they are not.
The grapes bloomed, their soft flowers hardly visible under huge green leaves. Soon small, hard green berries formed. I watched eagerly, uncertain of their pedigree or purpose.
One Saturday my father took me to the grape arbor. He studied the vines and their deep-purple fruit. He plucked a large grape and put it in his mouth. A little of the purple juice squirted on his chin.
THOMAS DeBAGGIO
He chewed and then he spat the purple skin on the grass. He smiled and handed me a grape.
My mother joined us in our grape picking. She put them in a large bag. That night in the kitchen I watched her clean the grapes and gently cook them to make grape juice. It immediately became my favorite drink.
I sit on our little brick patio surrounded with memories, events not yet blotted from my mind by the eager beast in my brain gobbling time in both directions. I am in a hurry to preserve as many of these memories as I can, not because they are mine, but because all of them label and characterize the time of my life. Opportunity is no longer wasted on me.
African-Americans and Hispanics are at a greater risk of Alzheimer's disease than whites, according to a new study. Researchers followed 1,079 white, African-American, and Hispanic individuals (average age 75) for five years to determine the incidence of Alzheimer's within these groups. Participants in the study were tested for the APOE gene and examined for dementia with standard diagnostic tests.
The risk of Alzheimer's in individuals possessing the APOE 4 gene was similar regardless of racial background. However, in those who did not have the APOE 4 gene, African-Americans had more than four times the risk of developing Alzheimer's as whites, and Hispanics more than two times the risk.
Established risk factors, such as education level and family history, did not account for these differing rates. The study authors suggest that, instead, previously unidentified genes or environmental factors may be responsible for the disparity. Further studies involving individuals of
LOSING MY MIND
varied backgrounds may reveal more about the genetic and acquired risk factors for Alzheimer's.
-JOURNAL OF THE AMERICAN MEDICAL ASSOCIATION^ MARCH II, 1998, JOHNS HOPKINS WHITE PAPERS
Memory is a mental stabili:^er and without it the mind becomes chaotic and unstructured, allowing ic)C)^ and ic)4o to merge.
Now I know how it was, Billy. I was on the other side then and I really had no idea what you were going through. I saw you striding along the street from time to time and you looked normal and cold. Several times your daughter came up to the greenhouse and after the first time I knew when I saw her what she had come to ask. The question was always the same: "Have you seen Billy.'^ He's wandered off again." I know the police brought you home a couple of times. How frightening it must have been to be sure of your route but lose your roadmap back.
It wasn't until the first time your daughter came that I knew you had Alzheimer's. It was a strange word and I knew little about it except you. It appeared exotic but not enough to trade places. I had no idea what went on in your brain. It is different now.
There was always a sense of desperation in your daughter's voice when she came after you. And some anger. Sometimes it seemed both of you lost something dear in each other. Where were you walking, Billy.'^ Send me a brochure. I want a good lot if there are any left.
More than half of individuals with Alzheimer's disease are prone to wandering. One of the most frightening—and potentially dangerous—behaviors associated with Alzheimer's, wandering can occur at any time and be triggered by
THOMAS DeBAGGIO
any number of factors, including medications, stress, restlessness, boredom, or an impulse to repeat an old, familiar activity, such as going to work.
Patients usually do not realize they are lost, and they seldom seek help and often do not respond when addressed. Passers-by, meanwhile, may avoid them, mistakenly attributing their behavior and appearance (patients may be dressed only in a nightgown, and act confused or disoriented) to drugs or alcohol, for example. Whether patients become lost just a few blocks from home, or travel quite far, they are vulnerable to exposure to the elements, hunger, traffic, and personal injury; and all the while, their families are left frantic with worry.
To help reunite families with Alzheimer's patients who have wandered away from home, the national Alzheimer's Association created the Safe Return program in 1993. Funded by the U.S. Department of Justice, Safe Return registers individuals with Alzheimer's into a national database and provides them with identification materials that list their medical condition and a toll-free number that anyone who finds them should call.
Since its inception. Safe Return has registered about 40,000 individuals and has safely returned about 3,000 of them. To register, contact the Alzheimer's Association, 919 N. Michigan Ave., Suite 1000, Chicago IL 60611-1676 (800) 272-3900. There are local Alzheimer's Association units throughout the nation.
- THE JOHNS HOPKINS WHITE PAPERS, "MEMORY," I999
I always waited eagerly for the arrival of the milkman. Bottles danced in the sturdy carrier making tinkling music as he came up the long front yard. I watched him carefully, the better to imitate him delivering empty botdes in the neighborhood.
LOSING MY MIND
It was a time unlike today, a time of personal service. A knife sharpener drove slowly along 14th Street periodically. He struck a piece of metal with a hammer causing a sharp unique sound that said, "Knife-sharpening man." This pied piper of honed steel attracted children like lemmings.
Trash collection was twice a week. An advance man took cans to the street where a truck with several men emptied them. Behind came another man to put the cans back.
Mail was delivered once a day, but at Christmas, letters and packages were delivered twice daily. College students were enlisted to help regular carriers.
I was amazed by the world at work, and watching the goings-on ignited my imagination. Many hours were spent imitating the men I saw working.
^^
There are many days of tears now. Some mornings I awake
and my eyes are wet. I cry, choked with emotion I cannot express. I am having trouble reading the writing I do with a pencil or pen. It used to be clear and sharp; now it wobbles and is full of uncertainty. The words come normally but the letters are sometimes not in the proper order. I spend valuable time deciphering the meaning in each letter of the alphabet until the word's meaning becomes clear. Progress is slow and I am losing time. A few months ago I had no trouble writing. I have to be careful to spell correctly but sometimes ...
I am aware of the loss of language more than ever before. I am afraid to write because watching the words come out distorted is painful and it reveals the destructive power of the disease over which I have no control.
Now is the last best time.
THOMAS DeBAGGIO
In the eyes of a Midwesterner, Washington and its environs was a strange place then, with odd customs and ways of speaking that did not immediately embrace people from Iowa. It was good that the language spoken in both places was English, and my parents noticed immediately the wide differences in the way people talked and acted in this new place.
Washington was a Southern city and my father and mother were less than happy living there. After I gained some years, my father told stories about the many Italian-Americans and African-Americans hanged by the Klan in places in the South, and there was fear of lynching in parts of Iowa even. I could never understand, at any age, how a place of birth, or skin color, could mark you for death. Little attention was paid to these things when I first arrived because my world was devoted mostly to sucking and pooping and growing, and being sheltered by my parents.
Immigration is in the blood on both sides of my family. My mother's family came from Norway, a place never mentioned to me. My father let me know early that his father, Harry DeBaggio, was born in Italy and was brought to America when he was eight. He told the story often to impress upon me the remembered roots running to the past, and to reinforce the pride and difference between our family and others.
We arrived early. The waiting room was crowded, and we took seats in an area where we could see the doctors hurrying back and forth along a carpeted corridor in their white jackets. I saw my doctor a couple of times and pointed him out to Joyce. Finally he came into the waiting room and took us to his little office with his kids' paintings on the wall.
He asked us to sit down in two straight-back chairs arranged in front of his desk. He sat opposite us and held a sheaf of documents with both hands. He looked uncomfortable, almost hiding behind his papers, creating a clear separation from us. It appeared almost as if he were trying to mask his face while handing down an unpleas-
LOSING MY MIND
ant verdict, a routine that he may have developed as a way to protect his own humanity over a number of stressful years of handing out bad news.
He looked at us both uncomfortably; then he looked at me. He was quiet and controlled.
"Have you received the final report.'*" I asked.
"You have Alzheimer's," he said matter-of-factly.
The statement exploded in my head and I was swept with emotion and struggled to hold it beyond recognition. Before I could catch my breath, he began talking about the medicines to be prescribed for me. It was at this moment Joyce entered the conversation. She was shocked at the manner with which the neurologist announced what amounted to a death sentence. She wanted details, understanding, some base from which to gain strength.
"How do you know.'*" she asked the doctor.
"We can't be sure," he said. The MRI and the electroencephalogram (EEG) showed a normal brain, he said. Absolute certainty on the diagnosis could only come from an inspection of my brain after I died, he explained, as a stream of other experts later confirmed. It was, as another specialist put it, "a difficult diagnosis." It was difficult to tell a patient because of its shattering effect and because it was a difficult disease with which to live. It was also difficult to determine without error when Alzheimer's was really at work.
To have Alzheimer's is a humbling experience in itself, and an emotional backbreaker. At the sound of the word you become bumbling and stupid, suddenly unable to divine the simplest of life's equations, although you try to hide it with a stiff upper lip and a knowing nod. It does not help when a doctor treats it as if it were a cold. That was when Joyce exploded with a series of questions, many of them drawn from her extensive reading about the disease.
The neurologist could not hide his anger at being questioned. Joyce wanted answers and the neurologist wanted to get along with the writing of prescriptions and send me on my way. At one point
THOMAS DeBAGGIO
he stood up, presumably so he could become a towering figure over us. But he seemed incapable of a straightforward explanation of what it all meant. Perhaps the disease and the difficulty in diagnosing it accurately caused him to hector and prevaricate and hedge. I sat watching the two of them, one asking questions, the other trying to duck straightforward answers.
Finally both the neurologist and Joyce remembered it was me who was the patient. I could no longer question the diagnosis of Alzheimer's. How could she.'^ Yet he had already conceded he couldn't be absolutely positive of the diagnosis.
Then he looked at us both, and it felt as if he were about to discipline a couple of errant children. "Are you both together on this.'^" he asked.
"I'd like to get started on the treatment," I said.
He looked at Joyce. "You both have to agree with this," he said.
Joyce was angry, startled at the neurologist's unwillingness to talk to her where she hurt, and I could see she was being put in an untenable place. She wanted an explanation and he could find none other than to impute the capabilities of the person who scored the test and suggest that I go through the same tests again given by someone else, preferably someone on the university's staff.
There was a brief pause and he looked at Joyce and said, "I'm not going to write the prescriptions until you get with the program."
The neurologist wanted us together but he didn't know how to talk to Joyce and every time he spoke he pushed her away. I couldn't understand why the doctor was being so stubborn. I didn't care whether Joyce approved of my accepting the diagnosis, and I wanted to start the medications immediately, for whatever they might be worth.
"I think I'd better come back later after we have had a chance to talk this over," I told the neurologist.
He gave us an exasperated look and showed us to the door. At that moment, I think we all knew we needed a different doctor. Later I thought about the incident and I realized it must be difficult
LOSING MY MIND
for a doctor to work with patients whose disease is essentially un-treatable, a case where science has failed in understanding the secrets of the mind and body. Every new patient with the disease is a reminder of medical science's imperfection. In the face of this, it is tough to teach optimism and offer a little hope. It is inevitable that some patient's fear and anger and bewilderment will explode and have to be absorbed by the doctor, but it need not end up frustrating his ability to relieve further suffering or hamper his ability to soothe sick bodies. The best doctors I have known have a soft touch and storytelling skills that help them gain the confidence of patients. With a disease like Alzheimer's, tender, life-affirming skills are essential.
Watching Joyce's anger at the neurologist's unwillingness to speak to her with comforting words and seeing him fight back was a shattering experience for me, especially on top of the diagnosis. Alzheimer's was not one of the diseases about which I had worried. Heart attacks took my father. I tried to follow the dietary guidelines to prevent such an outcome for me. Cancer killed my mother and I ate food that would counteract its ugly trademarks. I had never had any serious illness; I was a foreigner in a doctor's office or in a hospital. It was difficult for me to accept that I now had a fatal illness for which there was no cure, only the hope that my brain's eager course of self-destruction could be slowed for a while so I could dance with life
a little longer.
Every person has two APOE genes, one inherited from each parent. Alzheimer's researchers are interested in three common alleles of APOE: *2, *3, and *4. They are studying people who inherit different forms of this gene to learn more about risk factors for Alzheimer's. The relatively rare APOE *2 may protect some people against the disease; it seems to be associated with a lower risk for Alzheimer's and later age of onset. APOE *2 also appears to protect
THOMAS DeBAGGIO
people with Down's syndrome from developing Alzhei-mer's-like pathology. APOE *4 is the most common version found in the general population and may play a neutral role in Alzheimer's.
- "progress report on Alzheimer's disease," national institute on aging, 1999
This is a book about the contrast of evil and innocence in the mind of one man.
Agitation—which can include hostile, uncooperative, and excitable behavior—is a frustrating side effect of dementia that is often treated with neuroleptic and anti-psychotic drugs in nursing homes. Unfortunately, these medications often over-sedate patients and may even hasten cognitive decline. In a new study, researchers examined the effects of an anticonvulsant, carbamazepine, on the severe agitation of 51 nursing home patients (average age 86) with Alzheimer's disease, vascular dementia, or mixed dementia. About half were given a placebo and half an average of 304 mg of carbamazepine a day.
After six weeks, symptoms had improved in 77 percent of patients taking carbamazepine, compared to only 21 percent in placebo patients....
Agitation should be treated initially without drugs, but if non-drug methods fail, it is important to have drug options without disabling side effects. While these results are promising, the long-term safety and effectiveness of carabamazepine have yet to be established.
Losing My Mind Page 4
