Losing My Mind
Page 2
lam happy today. I realiied this was not yet a posthumous tale.
The brain does many things to ensure our survival. It integrates, regulates, initiates, and controls functions in the whole body, with the help of motor and sensor}' nerves outside of the brain and spinal cord. The brain governs thinking, personality', mood, and the senses. We can speak, move, and remember because of complex chemical processes that take place in our brains. The brain also regulates body functions that happen without our knowledge or directions, such as digestion of food.
- "progress report on Alzheimer's disease,"
NATIONAL institute ON AGING, I999
How do you express the true nature of tears in words? How do you define the limits of evil born of a secret disease? These thoughts lie silently on my mind and work their way through my body.
In geriatric cHnics, about 5 to lo percent of the patients seen for memor' impairment have reversible dementia due to medication. Some of the medications that may cause
THOMAS DeBAGGIO
memory impairment include the anti-inflammation drug prednisone (Deltasone, Orasone, for example); heartburn drugs such as cimetidine (Tagamet), famotidine (Pepcid), and ranitidine (Zantac); anti-anxiety/sedative drugs such as triazolam (Halcion), alprazolam (Xanax), or diazapern (Valium); or even insulin, which at too high a dose can cause hypoglycemia (abnormally low blood sugar).... Alcohol is the most prevalent intoxicant implicated in dementia. Fortunately, as is often the case with other drugs, the negative effects of alcohol on intellectual abilities can be reversed with abstinence, though chronic abuse may lead to permanent damage.
- THE JOHNS HOPKINS WHITE PAPERS, "MEMORY," I999
Before the end of my first year, my mother and father became immigrants and took up residence in an apartment in Washington, DC. It was a sleepy Southern town with a twang, and racial segregation was strictly enforced. Half a continent separated me and my birthplace, and more than miles divided them. My father went to work for the Bureau of Narcotics. It was half a lifetime, and many changes and surprises, before he returned to live in Eldora again.
/ don h know if any of us can be prepared for what is to come. It is hard to prepare for the sly tricks and sorrows of tomorrow. Better we hug each other more often and forget the creeping sadness that we know will overcome us.
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The lovely long spring with its silken days and sweet breezes was still upon us as I readied myself for the days ahead with their
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promise of quick forays into the specialist medical community. The sun was almost ever-present and in the afternoon you could peel off the layers of clothing that were no longer necessary. The fresh, moist air of the greenhouse was filled with the fragrance of herbs and the rich, earthy aroma of wet peat moss. I learned to gauge my life by the seasons and their tempestuous churnings often mirrored my life.
There was always the work with its long, exhausting ninety-hour weeks, standing until my legs felt like stiff poles. I was in close quarters with customers pumping me for information and demanding horticultural surrender. Nature was the chief disrupter and it created the most damaging surprises and produced the most fearful stress, especially during the early spring when sudden weather changes threatened to quickly kill our carefully nurtured stock. Joyce and I talked about these things and the stress of the work and how it might cause temporary memory loss and I thought my memory problem was of a low order and was not serious.
I always believed the less I saw of doctors, the better I would be. There was a tinge of fear in me now, perhaps because I had no idea who this new doctor was and what he might find in me. I hoped it would not be a thing that had lain silent for so many years, the cancer that took my mother, or the bad heart of my father.
Having avoided doctors most of my life made them special and my lack of interaction with them meant I did not understand how they behaved. In my world doctors were receptacles of knowledge that you went to when the home medicine chest didn't work. My avoidance of the medical profession may have been part childhood fear, but the truth was that I had never needed much help from doctors. I rarely got sick, even with colds.
The doctors I have known are few, but memorable. I saw a doctor when I was a child and I can still remember the tall, youthful, balding Dr. Ashenbaugh, to whom my parents took me after we moved to Washington, DC, from Iowa. He was an old-time family practitioner, by choice, not age, and he was careful to explain things
THOMAS DeBAGGIO
even to kids. He was always available by telephone and made occasional house calls. Once he gave me a thermometer.
It was Dr. Ashenbaugh who had come to my aid when, as a two-year-old, I got under my mother's feet in the kitchen and caused her to spill boiling spaghetti water on my back. The sweatshirt I was wearing quickly became saturated and had to be cut off my back. I carry the burn scars today. For years as a youngster, I was afraid to let any other child see me without my shirt for fear they would make fun of my scars, which were prominent, ugly disfigurements.
There was another doctor I saw just after I finished high school. A girlfriend suggested him because her mother knew him through work she did at a clinic. He was a splendid fellow and took time to tell great stories. As a young man, he had been a sailor on a cargo ship that had gone around the horn of Africa and he recounted exciting events that took place during his adventure.
While staying away from doctors had worked well over thirty years, separation from them was quickly coming to an end. I was now on the verge of seeing more doctors, nurses, and specialists than I had seen in all my previous years.
Once a disease is named, especially if it is Aliheimer*s, you begin to understand it and that means recogni:^ing it in everyday things. It is not long before you are under the spell of the disease. Its heartbeat is your heartbeat. There is danger here in trying to understand evil, especially when it is so close to you, gaining control of your brain. I worry I will become too conversant with this disease in me, and it will hijack my life with my permission.
Alzheimer's affects as many as four million Americans; slightly more than half of these people receive care at home, while the others are in many different health care
LOSING MY MIND
institutions. The prevalence of Alzheimer's doubles every 5 years beyond the age of 65. Some studies indicate that nearly half of all people age 85 and older have symptoms of AD.
- "progress report on Alzheimer's disease,"
NATIONAL institute ON AGING, I999
I was not an immigrant like my grandfather who came with his father to America from northeastern Italy in 1892 when he was nine years old. Steamship Werra was slow and the food bad, he said. Going from Enrico in Italy to Harry in Iowa, he had no accent and read Shakespeare though his father took him out of sixth grade to put him to work. He and my grandmother Lottie were stuck when a ferris wheel stalled, leaving them high above the ground. It was a perfect place for romance and soon after they married.
The cognitive changes of dementia—impairment of memory, learning, attention, and concentration—can occur in depression and make diagnosis more difficult. In general, however, a person is most likely suffering from depression if he or she has a history of psychiatric illness or has a sudden onset of cognitive symptoms, difficulties with sleep, or precipitation of symptoms by an emotional event. Also, depressed patients often complain that they're unable to concentrate or remember things, while those with dementia are generally unaware of any mental problems. For example, when depressed persons are asked a question, they are likely to say, "I don't know the answer." By contrast, someone with Alzheimer's disease might try to answer, but be unable to do so correctly.
I start thinking about something intently and then my thoughts wander through fields of memory and I boh to the surface suddenly and wonder for a moment who I am, and whether I have truly lost my mind.
THOMAS DeBAGGIO
In Alzheimer's disease, communication between some nerve cells breaks
down. The destruction from Alzheimer's ultimately causes these nerve cells to stop functioning, lose connections with other nerve cells, and die. Death of many neurons in key parts of the brain harms memory, thinking, and behavior.
- "progress report on Alzheimer's disease," national institute on aging, i999
Suddenly I am surrounded by clutter. I look around my room. To the right of the computer is my desk. Floating on the desk are deep piles of paper, scattered envelopes, hastily scribbled notes. File folders full of papers almost cover the telephone, the two answering machines, and the fax. A white straight-sided coffee cup with blue lettering proclaiming Lawrence Welk Resort Village is stuffed with pens and a few pencils. A wire rack designed to hold envelopes bulges with bills. A bright-red Webster's New World Dictionary, second college edition, leans against the fax machine. The far corner is home for racks of file folders, my last attempt to bring order on the desktop, but they are holding piles of books and random sheets of paper. On top of the pile is one of my favorite books. My Summer in the Garden, by Charles Dudley Warner, published in 1874. Inside the front page is an inked inscription in clear script, "Abby Bassy, July I, 1875." It was a gift from one of my customers years ago when I was smitten with Warner's garden writing.
On my left, there is better order but there are piles of books on top of books as well. I can hardly move around the floor. I have maintained, so far, a twelve-inch-wide path in which I can see the bare, dark wooden floor.
Elsewhere there are fall garden catalogs that will eventually be mailed, four pair of leather boots, two ready to be thrown away. There is also an assortment of large, open paper bags, empty and
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awaiting duty. The tops of the filing cabinets are covered with stray papers and books. Notes hang from the calendar attached to the white cabinets on the wall above my desk.
There is more of this mess that need not be cataloged. This is a tragedy for a man who was once tidy but it is a snapshot of a room that mirrors my brain, a jumble of words awaiting order with nowhere to go. Meaning is lost in a hurried moment, a word lost in confusion is never recovered. So it is that Alzheimer's begins its conquest.
The dusty, flat earth next to our apartment was perfect to catch breezes on hot evenings. Men in undershirts and slacks gathered to test horseshoe skills. My father took me to this place of competition and camaraderie. Sweat beaded on arms and chests from exertion and heat. Heavy metal horseshoes made yellow clay smoke. A hurrah clang of metal was heard as a horseshoe slid in high for a ringer.
On March 23, 1999,1 went to the National Rehabilitation Hospital for a neuropsychological evaluation. On May 6, 1999,1 underwent a full neuropsychological evaluation. It was numbing and took about six hours. Test results were as follows:
intellectual: On the nart (National Adult Reading Test) which is used to estimate pre-morbid intellectual functioning, the patient obtained an estimate pre-morbid IQ score of 124 which is indicative of superior pre-morbid intellectual functioning.
On the WAIS-R, the patient obtained a Verbal IQ= 93, a performance IQ=9i and a FSIQ=9i. These scores all
M
THOMAS DeBAGGIO
fall at the lower end of the range of intelligence classified as average. There was significant sub test variability in verbal sub test scores. On vocabulary, the patient obtained an above average score. Fund of general information, digit span and verbal concept information were in the average range.
Verbal numerical reasoning was mildly impaired. On a sub test of social judgment and practical knowledge, the patient obtained a mildly to moderately impaired score. When asked what to do in the movie theater if he were the first person to notice smoke and fire, the patient responded, "yell fire." He did not know why it is better to borrow money from a bank than a friend and why a marriage license is required. On performance sub tests, the patient obtained average to low average scores on all sub tests except on picture completion on which he obtained a mildly impaired score. Picture completion requires the patient to discriminate essential from nonessential details.
- NEUROPSYCHOLOGICAL EVALUATION
Within a few months of my diagnosis, I am well aware of my cognitive loss and I can track Alzheimer's disruptive work during the day, but it is minor and subtle.
Nerve cells in the brain have the capacity to last more than I GO years.
- "progress report on Alzheimer's disease,"
NATIONAL institute ON AGING, I999
I began writing seriously over half a lifetime ago and when I began, as a teenager on a local daily paper, I floated above the earth with ex-
LOSING MY MIND
citement. With experience, I no longer floated but I was rooted to a place. I was bent on uncovering life's joys and its illusions. Now writing is like walking through a dark room. Sometimes I have to get down on my knees and crawl to find a path through the silent jungle where words are not easily picked and meaning is untrustworthy.
There are many days of elves and magic when you are small and young in the world. It is a time without routine and rules flower with baby talk, a language without lexicon, pregnant with the breath of milk and time.
Memory and New Learning: On the WMS-R, the patient obtained the following index scores: Verbal = 54, Visual=57, Attention = 88, and Delayed Recall = 58. These scores are all severely impaired except for attention which is low average. The patient's recall for paragraph length story material was performed at the 2nd percentile upon immediate recall and at the first percentile upon delayed recall. Immediate recall of designs was performed at the 4th percentile and delayed recall of these designs at the first percentile.
- NEUROPSYCHOLOGICAL EVALUATION
The small white house on 14th Street was the first my parents owned after moving east. It resembled the white house left behind in Eldora but it was set at the rear of the lot and grass ran to the street where a tangle of rosebushes burst into flame in spring.
Every healthy person has 46 chromosomes in 23 pairs. Usually, people receive one chromosome in each pair from each parent. Chromosomes are rod-like structures in the cell nucleus. In each chromosome, DNA forms two long,
THOMAS DeBAGGIO
interr^'ined, thread-like strands that cdnry inherited information in the form of genes.
- "progress report on Alzheimer's disease." national institute on aging, 1999
Getting used to the idea of dying is difficult, emotionally and physically, but what awaits me is losing the idea of dying and that is incomprehensible and at the same time it may he liberating.
Neurofibrillanr^ tangles are abnormal collections of twisted threads found inside nere cells. The chief component of tangles is one form of the protein, tau. In the central nervous system, tau proteins are best known for their abilit}' to bind and help stabilize micro tubules (the cell's internal support structure skeleton).
In healthy neurons, micro tubules form structures like train tracks, which guide nutrients and molecules from the bodies of the cells down to the ends of the axons. In cells affected by Alzheimer's these structures collapse. Tau normally forms the "railroad ties" or connector pieces of the micro tubule tracks. However, in Alzheimer's tau can no longer hold the railroad ties together, causing the micro tubule tracks to fall apan. The collapse of the transport system first may result in malfunctions in communication between nerv^e cells and later may lead to neuron death.
In Alzheimer's, chemical altered tau twists into paired helical filaments (r^'o threads wound around each other). These filaments are the major substance found in neurofibrillar)' tangles.
- "progress REPORT ON ALZHEIMER'S DISEASE," NATIONAL INSTITUTE ON AGING, I999
LOSING MY MIND
The house next door on 14th Street belonged to Mr. Rice, who had grandfatherly ways. His house was close to a street barren of sidewalks and curbs. The backyard had a large chicken house and the fence line was studded with geometrically perfect beehives. Mr. Rice often ran after his swarming bees with his net and a smoke machine
. He shared honey with me.
Impressions: This fifty-seven-year-old man who subjectively reports increased word finding difficulties and forget-fulness shows neuropsychological test findings indicative of a cortical dementia and a pattern entirely consistent with early stage Alzheimer's Dementia. This patient shows impaired short term memory and poor episodic memory. He evidenced word finding difficulties both in conversation interaction and on formal testing as well as some difficulty with numerical reasoning and calculations. There is some evidence that there has been an overall intellectual functioning from premorbid level with the patient showing some impairment in practical and social reasoning and judgment. This pattern of deficits occurs within the context of intact ability for abstract reasoning and conceptual thought.
- NEUROPSYCHOLOGICAL EVALUATION
IVhat will we do when all the lights are liti
Genes are made up of four chemicals (bases) arranged in various patterns along the strands of DNA. In each gene, the bases are lined up in different order, and each sequence
THOMAS DeBAGGIO
of bases directs the production of a different protein. Even slight changes in a gene's DNA code can make a faulty protein, and a faulty protein can lead to cell malfunction and possibly disease.
- "progress report on Alzheimer's disease,"
NATIONAL institute ON AGING, I999
lam being gobbled up in time. The words are under control but the letters that form the words squirm in their own directions.
Many times I watched Mr. Rice grab a chicken by its legs and carry it to a large stump in his backyard. He threw the chicken on the stump and whacked off its head. The chicken jumped around on the grass for several minutes while blood turned its feathers red.