- AMERICAN JOURNAL OF PSYCHIATRY^ JANUARY I 998, JOHNS HOPKINS WHITE PAPERS
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LOSING MY MIND
I first learned about dirt and what it did to clothes when I played in it as a child. My mother found many opportunities to remind me of its dangers.
My father taught me the necessity of dirt, especially garden soil. We went many times to the front lawn where the spaded earth was raked smooth. In this place, he showed me how to trickle seeds in rows and cover them lighdy. They sprouted to become small heads of crisp lettuce and pungent radishes to put in salads over which olive oil and vinegar were drizzled to be eaten with gusto at the evening meal.
I sit at my worktable, a still world around me, and stare at the wall, empty of decoration. I become lost in the vocabulary of silence. Thoughts squiggle and writhe into sentences that disappear before they can be acknowledged.
I want to face this disease with clarity and reality. It is hard for me to do but it is harder for Joyce and Francesco, I think. They see me differently. I see the outside world as they do, but I also see the inside, what I am thinking and feeling. I know it is difficult for them to watch me deteriorate and if I keep quiet they won't see what is really happening. I do not want to make them suffer with me but I also want them to understand the uncontrolled evil this disease represents. They must know, as others should, the destructive power of it. Although subtle in attack, Alzheimer's is the closest thing to being eaten alive slowly.
Fall was crisply wondrous, a special time between summer heat and angry, cold winter. Apples were ripe on the two large trees in front of the house on 14th Street. Climbing to pick firm fruit was unnec-
THOMAS DeBAGGIO
essary. The apples fell of their own weight, littering the grassy lawn with the sweet smell of autumn, a scent that quickly attracted many of Mr. Rice's bees.
Most apples were wormy and bird-pecked. My mother peeled buckets of apples to make thick, aromatic sauce to put in jars for winter use. Life was exciting in the new house. I did not know my mother was pregnant and how significandy my life was about to change.
When you are very young, every day is a new adventure and memory is not a force against which the present is compared.
Should I go to some exotic place to live a short, happy life before the bumbling and forgetfulness consumes me.'^ Perhaps Friuli, that most Eastern province of Italy where my grandfather was born. It is not likely because we now have to think of the potentially overwhelming costs of this slow-moving, disruptive, and deadly disease.
Disorder and confusion mark life's beginning and end. In between there is a blur of questions. "Who am I.^" is a frequent question, expressed at first by the simple yips and shouts of a baby. Later the question becomes all-encompassing.
For me now, any question of identity becomes profound and difficult. Without memory you lose the idea of who you are. I am struggling more than ever to find answers to questions of identity. I am flooded with early memories preserved in protected places of my brain where Alzheimer's does not reign supreme. These memories become the last remnants of my search for who I am.
Am I anything without them.'^ This question never occurred to me until a few months ago when the word Alzheimer's entered my vocabulary. It was then that questions of being took on a sinister glow. At some time in the near future, I will begin to slip out of time, casually, in small increments. I will float on a tranquil sea of memory one moment and be swept away the next by boisterous waves that leave me confused and uncertain.
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THOMAS DeBAGGIO
with high cholesterol will have a stroke. However, many researchers believe inheriting an APOE *4 gene, in association with lower memorv' performance in older people that graduallv worsens with time, may be a predictor for who is going to develop Alzheimer's.
- "progress report on Alzheimer's disease," national institute on aging, 1999
Mv disease is hard on Jovce but she tries to hide it in a routine of work and domesticit^. Alzheimer's deprives us both of life. It is the most unfair thing about my predicament. We waited too long for a time of release and retirement, and to have this disease sprout in my body like a deadlv. rampaging weed is shattering us both.
The weight of unhappiness falls hea-ier on Joyce because she coimted on recapturing the pleasure and travel we postponed. Only re-cendy, she went through the worse double sorrow and pain a daughter has when both father and mother die ^ithin a few years of each other.
We should have had fun earlier, much more of it, instead of working constantlv. I should have paid more attention to Joyce's needs and desires. Instead I focused on my own dreams, leaving no time for joint leisure, travel, and reflection. Now we have my ugly, slow death to live through. •
Alzheimer's has taught me it is wise to look in the same place many times for the thing you desire.
I can't see or feel this disease entering my brain but there will come a time when not only will I be able to see it more clearK^ others will see it with clarity and sadness. Thev will have to live through the sorrow of my decline at the same time I will no longer recognize myself. X'ill there be a wav for me to acknowledge this without language.-^
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LOSING MY MIND
Animals that exhibit the pathophysiology and symptoms of human disease provide a unique opportunity to investigate the causes and development of these diseases. And they can provide a safe way to test the possible treatments. In 1996 a team of researchers at the University of Minnesota in Minneapolis, supponed by the National Institutes of Aging and the National Institute of Neurological Disorders and Stroke, developed a new mouse model for Alzheimer's by inserting human genes containing different mutations of amyloid precursor protein into the mouse DNA. This genetically engineered (transgenic) mouse is the first to develop learning and memorv problems characteristic of Alzheimer's patients. Researchers continue to develop new transgenic mice carrying various combinations of human genes linked to Alzheimer's.
- "progress report on Alzheimer's disease,"
NATIONAL institute ON AGING, 1999
One part of my life is over. A new unknown life begins today, a kind of death march, although one we all take at one time or another. There are more mysteries than ever at a time when knowledge should have provided almost enough. For me, now, my focus is on the cemetery. The only question is how many months or years before I move in.
It is not often a man in my century and at my age becomes possessed in the peculiar way Alzheimer's sneaks in and begins taking over. You have to look to the Middle Ages to find cases of "possession" that parallel this disease's slow, gruesome torture. I am now a man under an indeterminate death sentence.
The brown wooden Crosley radio with its majestic cathedral shape became my imaginative link to the world. Bill Herson, the radio
THOMAS DeBAGGIO
voice every morning, called himself "The Time Keeper." He kept the time in view, beating the rhythms of infinity to get us off to work and school.
On sick days I stayed at home where the radio was my softly worded companion as time slipped by. There was also the Breakfast Club, a variety show from Chicago, where everybody was invited to march around the breakfast table. Afternoons were devoted to steamy soap operas like Stella Dallas; this was a good time to nap.
The best part of the radio day was evening adventure serials. They lasted fifteen to thirty minutes and brought spine-tingling stories to keep listeners hanging with excitement day after day. These programs had a similar theme, the rooting out of evil, and featured stars like Johnny Dollar, Tom Mix, the Shadow, Sergeant Preston and his dog King. Classic
themes of the war between good and evil filled the airwaves, preparing me for life with morality plays without nuance.
This evil disease sleeps on the edge of my consciousness, always there to remind me of its wicked strength over me.
It is in the lonely hours that words sing to me and recently they warbled of death and my obituary. What will the obituary say.'^ Will it talk of the small, lonely boy inside the man.'^ Will it reveal the moments of explosive emotion.'* Have my deepest secrets been leaked by someone I hurt.'* Will it spotlight my indecision.'* Here, have a look at my broken heart.
I have made a mess of a life designed with much promise. Instead of a glowing resume, I have a tattered life of insignificance. A life in backroom picture frame shops and steam-hissing tailor shops. A life of dirt and exhaustion. It turns out, to my recent surprise, a life that touched a few people and made them happy, or so they say in their kind letters.
An ordinary life by definition. Just what I feared. No photos on the French Riviera surrounded by near-naked young women; just a
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few pieces of paper with honors from my friends. Yes, just an ordinary life; and now it is coming to an end. The finish does not feel ordinary at all. It is the most exciting time in my life. As it should be.
New findings from Finland support the theory that head injuries increase the risk for dementia. During an initial two-and-a-half year period, researchers monitored the occurrence of head injuries in 588 individuals age 70 and older, and administered a shortened version of the mini-mental state exam at the beginning and end of the study period. They then followed the subjects for another two-and-a-half years to see if cognitive decline resulted from or preceded head injuries occurring after a fall.
A major head injury—for example, one involving fractures, dislocations, or the need for stitches—more than tripled the risk of cognitive decline. Moreover, the second part of the study showed that the falls associated with head injuries resulted not from cognitive decline but mainly from increased age, use of psychotropic medications, or the presence of hypertension.
By evaluating individuals before they sustained an injury, this study differs from previous ones, which often relied on recall of past injuries to determine risk. While these results provide strong evidence that cognitive decline can result from head injuries, the possibility remains that the falls were an early manifestation of dementia. How head injury might lead to dementia is also under study.
- NEUROLOGY^ FEBRUARY 1999, JOHNS HOPKINS WHITE PAPERS
Having a deaf cat in the house has taught me a lot. During a violent rain, Sabina, the deaf cat, sat quietly in the kitchen while our second
THOMAS DeBAGGIO
cat, Una, was nowhere to be seen. The rain and hail was loud and violent but Sabina remained calm and wanted to eat. Is there a lesson here for a person with Alzheimer's.-^
Instead of becoming emotional about me and this brain disease, if my friends thought about it, Alzheimer's could be a liberating event, freeing me to float through life and stand it on its head. Come fly with me.
The diagnosis, with little or no workable therapies to stop the disease, was a sentence of death as surely as birth is a sentence of sorrow, but more immediate.
I have only a few seconds to capture a thought before it disappears from my mind. Scraps of ideas flit like birds. This is the worst thing to happen to a writer.
One evening the hulking Crosley in the kitchen brought news that World War II was history. After dinner I marched up and down 14th Street waving a little American flag and shouting at the top of my voice, "The war is over." We believed in our shortsightedness that war was finished for good.
I am running after thoughts all day. Ideas evaporate like snowflakes on a warm roof. A few years ago I felt normal and I was as sharp mentally as Francesco. Now I can't remember his age or do the math in my head to figure out how old he is. My mind is drifting out of control. I have to wait like a hunter to capture a thought. It is tough work all day to chase words flitting away before they anoint paper with their color.
I want to cry and I do, but it is a peculiar sound, like a man choking to death. I want to scream, but it won't come. Where did my voice go.'*
Investigators suspect that accumulation of beta-amyloid 48
LOSING MY MIND
protein may be one cause of neuronal damage in Alzheimer's disease, possibly the oxidative reactions. But research into this topic is still preliminary. Now, in a new test-tube study, researchers used beta-amyloid protein for both humans and rats to study its reactions with other cell components.
Human beta-amyloid protein binds iron and copper— metals present in excess amounts in the brains of Alzheimer's patients—which leads to increased production of hydrogen peroxide. (In contrast, the rat protein does not.) Further evidence of these changes still must be seen in human studies, but if confirmed, these results represent a significant advance in the understanding of Alzheimer's. They show that beta-amyloid protein is directly responsible for oxidative damage to the neurons, and suggests a new approach to Alzheimer's treatment—finding interventions that prevent the oxidative reacton.
- BIOCHEMISTRY, JUNE I 5, I 999, JOHNS HOPKINS WHITE PAPERS
As I sit in the waiting room of the doctor, I realise I am at the edge of failure and hope.
I have grown plants—herbs and vegetables mostly—from the time I was six, and for the last twenty-five years, commercially. As a job, this activity has allowed me a close look at the life and death of plant species. My prolonged contact with vegetative life has provided me with insight on the life and death of my own species. We scream louder.
v;.^
THOMAS DeBAGGIO
Thyme was blooming in the garden when testing was completed. I called the doctor's secretary to arrange an appointment I hoped would put a name on the malady that afflicted my memory. Over a period of three months, I underwent a series of tests. Some of them were in daylight, some in the dark, others in heavy, surrealistic machines.
Although I had been through the tests, I received no word on the results. In my usual offhand way, I interpreted this as a good sign. I was certain that if a brain tumor was discovered by the MRI, notification would have come immediately, and the same was true of the EEC I had my doubts about what a series of written and oral tests could reveal. As I soon discovered, this day-long oral and written test was pivotal to the final diagnosis.
The doctor could see me May 3. Finally, I was to have the results of the examinations and tests carried out over the months of March, April, and May. I went to his office and sat again in the waiting room full of people who all appeared ill and in need of care. I waited over an hour on a beautiful sunny day. Finally I was called to the neurologist's office. We sat down opposite each other and sang each other pleasantries for a few minutes. He told me that the MRI was normal, as was the EEC Then there was the prolonged silence.
"Do you have the test results.^" he asked.
"No, " I replied. "I don't know anything about the test results. I thought you had them and were to give me the results today. No one told me I was supposed to have the test results at all." His face began to contort slightly and I could see he was becoming angry.
"I don't know who gave you the test," he said.
"I am sure your secretary knows," I said. "She made all the arrangements for the testing."
I had the list of specialists his secretary had given me and I handed it to him and showed him where the tests were given.
"Why wasn't the testing done here.'^" he asked.
"I assume it had something to do with my health insurance carrier," I said. "I know your secretary talked to them before she gave me the schedule."
LOSING MY MIND
The neurologist was exasperated now and on the edge of a big anger and he took the sheet of paper with the appointment Ust on it, signed by his secretary. He found the telephone number for the psychologist and dialed her number. He reached the psychologist's secretary. He was
still sparking with the kind of anger that is slighdy repressed. He asked when the test results would be available. He sounded rude and angry. The secretary told him the psychologist was scoring the tests as they spoke and the doctor would have the results within two days. He told her where the tests were to be sent and slammed down the phone.
He looked at me for a moment and pushed the piece of paper with the telephone numbers toward me without saying anything. His eyes continued to burn into me and he asked me to count backward from loo by y's. I objected mildly; I didn't understand what could be gained by the exercise but I accepted it as some kind of punishment. I struggled under the weight of tension and anger in the room but I couldn't get anywhere counting backward. The doctor told me to make another appointment; he said he would instruct his secretary to make sure I could get a quick appointment.
Two days later I called the psychologist who ordered the tests and scored them. I apologized to the secretary for the behavior of the doctor a few days earlier. She was tough and sweet and she told me the test results had been transmitted to the doctor the day after my visit. When I called the doctor's secretary later that day to make an appointment, she was expecting me. I could see the doctor the next day. May 6. I thought it was a good time to invite Joyce into the process and asked her to come with me. She was anxious to meet the doctor and learn the results of the tests.
Having a mother with a baby-swollen belly was strange and a lot to explain. For a three-year-old this was a difficult time. What I did understand was that I was suddenly expected to share.
As my mother got bigger, my father made arrangements for someone to care for me during the day while he worked and my
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mother was in the hospital for a week or more. My father knew a woman in the apartments from which we had recently moved who cared for children during the day and he enlisted her.
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