Like all toys, the fun soon faded and it became a large knick-knack in the attic room. It was the best thing I ever acquired as trash. What made scavenging fun was its dance with chance. There was another aspect not lost on me even then. Trash put out for pickup brought me in contact with the broader world outside family and showed me history humbled.
My world has become tentative and I have difficulty naming things. It is most obvious when talking about the plants I once knew so well. Now I am full of tentativeness and my mind has become a handicap.
Having Alzheimer's helped me see how little we know ourselves, even those so well educated it is hard to understand them when they speak. No matter their station in life, almost everybody ends up asking me the same question once they know I have Alzheimer's. "Have you tried alternative medicine.'^" they ask. A few years ago
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this stuff was sold on street corners; now it is the talk of the salons. A flyer offering a pill to cure Alzheimer's arrived in the mail, probably from some well-meaning individual who wanted to offer me some hope. It was full of promise and hyperbole, but the cure recounted was from a bump on the head, not Alzheimer's.
These are drugs (when they have any active ingredients at all) for the hopeless, medicine worth a try when all else fails. It is making a lot of money for a few unscrupulous crooks who can easily delude the desperate. It is just another sign the standards we once hugged and venerated have been smashed, and true intellectual inquiry is in its coffin awaiting burial. It is dangerous and foolish to have a dual medical system.
This may be the last Christmas of which I am conscious. The sad, wide yawn of Al^heimer^s releases the crushed graffiti of the soul. The graffiti will take over soon, shredding moments of lucidity, tearing them into tattered twinklings without meaning.
I was a Cub Scout without much enthusiasm for the blue uniform or what went with it. Joining the group was part of growing up, but it was not enough to keep me interested. I tired of the merit badge race quickly and my parents saw this immediately and realized I needed some other socialization method.
My Cub Scout career was not a total failure. I made a crystal radio set, the precursor to radios with vacuum tubes and speakers. Radio was still young in the late 1940s and my father remembered his own happy crystal-radio days.
I sat in the attic room overwhelmed by thoughts of invention. The crystal radio was a way to build technology skills. To construct such a thing needed little skill and the equipment was cheap: copper wire, a used oatmeal tube, some shellac, a piece of wood, and a bit of crystal.
When it was finished, I stuck the antenna out the window, slipped a cheap headset over my ears, and slowly moved a piece of copper flashing across the former oatmeal box, now circled with
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wire and shiny with yellow shellac. It took patience but finally I heard the lonesome twang of hillbilly music from WARL, a country music station about five miles away. I felt the warm emotion of success fill my body as I listened to sound coming through the earphone. For the first time I made real magic with my hands.
/ am no longer afraid of my own vulnerability but I am also not quite used to it and am wary of its rugged power.
I can no longer remember a time when my mind held an idea for a day or two while it waited for the gestation of words that squirm across paper, alive and still malleable. Yet that time, when memory was so agreeable and sharp, was only a few years ago.
I bleed emotion every hour and play with a tricky shifting alphabet of stumbling words. I have just spent five minutes struggling to spell the word "hour."
There was crying coming from my office and I opened the door. I saw myself sitting upright in the chair, staring at the blank computer. I was crying in the dark. Will somebody help me?
Alzheimer's brings a new perspective on life. You begin to think about what the disease takes from your life. It makes you think of simple everyday things becoming difficult and then impossible.
One of the things I value most for the joy it brings is playing with my cat, Sabina.
Patients with Alzheimer's vary considerably in the clinical characteristics of their disease, including the age at which symptoms appear; the rate at which the disease progresses; the emergence of disturbances of mood, thought, perception, and behavior; the development of Parkinsonian fea-
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tures; and the presence of a family history of Alzheimer's-like dementia. This clinical variability suggests that Alzheimer's, as currently defined, may more closely resemble disorders such as mental retardation or anemia, which have multiple contributing causes, rather than a disease with only one cause.
In research supported by NIMH and NIA, a group of investigators at Carnegie Mellon University's Western Psychiatric Institute and Clinic are teasing out the reasons behind this clinical variability by searching for genetic and other biological factors, demographic characteristics, and environmental exposures that may influence the susceptibility of individuals to developing Alzheimer's. Identifying these risk factors will provide clues about the causes of the disease and lead to the development of effective treatments. Furthermore, because the degeneration of brain cells that leads to Alzheimer's appears to begin decades before the first symptoms emerge, risk factor profiles will be important in identifying asymptomatic individuals who are in the earliest stages of developing Alzheimer's. Such individuals are the most likely to benefit from preventive treatments.
In this research, the investigators recruited over 300 healthy first-degree relatives (brothers, sisters, or children) of patients who suffer from Alzheimer's. These relatives, who are at risk of developing Alzheimer's, were carefully evaluated for numerous characteristics that might contribute to their increased susceptibility. The study team also established a library of cell lines from most of this group so that the search for genetic and biological risk factors for Alzheimer's could continue indefinitely even after the study was concluded.
This at-risk group has now been followed for approximately 10 years and, so far, 18 have developed Alzhei-mer's-like dementia. As this group grows, the team will
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continue to search for traits that contribute to the risk of developing the disease.
The research team also has conducted studies on the brains of patients who have died with Alzheimer's to learn more about the development of depression and related behavioral disturbances in patients with dementia. These studies have shown that the death of neurons in the brain that release particular neuro-transmitters is associated with the development of serious depression (more subtle dysfunctions of these neurons may contribute to the development of clinical depression in nondemented patients). This finding may partially explain why depression in Alzheimer's is more difficult to treat with antidepressant medications. Moreover, the recurrent nature of major depression in Alzheimer's may reflect the progressive loss of these brain cells over time. Current studies are focusing on the molecular and cellular processes that lead to the death of aminergic neurons in the brains of patients with Alzheimer's as well as other aspects of the clinical biology of depression and related behavioral disturbances in Alzheimer's. Advances in this area may suggest interventions that spare these and other brain cells in Alzheimer's and other neurodegenerative disorders.
- "progress report on Alzheimer's disease," national institutes of aging and health, i999
The discipline of the mind crumbles into slogans and short bursts of anger. I should run for president.
Gifts are traditional at Christmas but this year will be different. The gifts all have new meaning in the shadow of Alzheimer's. The flood of tokens and cards began early. The best so far comes from Noah and Nina. They presented me with a rock wrapped with a few strands of raffia. Their gifts are always simple and symbolic.
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The heavy gray stone was plucked from a Virginia mountain stream. It is graceful and solid and it reminded me of the work of the great Swi
ss sculptor Giacometti.
There is more to this rock than its heavy weight and solid, weathered gray appearance. It has the shape of part of a large human foot or hand. The cool, hard tactile pleasure of its bone-smooth surface invites touching. It pleases me to possess a piece of the earth blown from the ground in a fiery cloud thousands of years ago.
This coldly solid piece of the explosive past reminded me of the earth's longevity and the firmness of the past in contrast with our ephemeral present. Like many old objects it is without verbal account but nevertheless it is full of meaning and a reminder of the permanence of time. Unlike our own wispy recollections, this rock is a survivor of memories beyond our knowledge, a mute reminder that the past lives silently in the present.
Here I am alone, barking at death. Some days I feel I have fallen down a deep well of anxiety.
^^
Alzheimer's creates private family pain, the kind hidden and denied. It is so corrosive it can leave scars on the soul and disrupt relationships. I stepped in foolishly without a thought of the future or those around me whom I love. I believed it was my pain and I had the right to expose it, but now realize my pain has engulfed my family; my pain has become theirs.
I worry I might hurt my wife and son and engender new frustration in their lives. Joyce, Fransesco, forgive me if these revelations slap you and flavor your mourning with bitterness. Yes, with Alzheimer's mourning begins with the diagnosis. The nightmares come after the burial.
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There are moments now of indecision and confusion. Before me is a cup, the same cup I have used to measure milk for my breakfast oatmeal for years. For a moment this morning I was uncertain why the cup was there or what to do with it. This is the way Alzheimer's wiggles its evil fingers at you, reminding you that before long it will have complete and absolute control over you. In many other ways the disease has come to capture my attention and barely a minute goes by that there is not a mental or physical reminder of its absolute power over me.
I am writing this while I prepare my breakfast and it is cold in the time it takes to jot these words on slips of paper I keep handy for such occasions. My crippled mind constantly sends me searching for meanings to inhabit my new life. Sometimes I think Alzheimer's is like a destructive addiction but without any pleasure accompanying it. Nobody spends money for an Alzheimer's high.
My father was a great believer in self-control. He lived by the belief that he was in control of his body. One day he came home from the office and pulled an unopened cigarette pack from his white shirt and smiled. "I didn't open this today," he said. "I am going to stop smoking because it is a bad habit."
He kept the unopened package of cigarettes in his shirt pocket for several months and eventually threw it away. I never saw him smoke a cigarette again. It was a demonstration of his willpower and his desire to cut his risk of an early death. No one knew he would be dead of heart disease before he cleared sixty.
His stern belief in willpower, seemingly such as admirable trait, brought us to loggerheads later in life when he forgot you can control yourself, but you cannot control the rest of the world.
The diagnosis was based on a six-hour test I took May 6. During those six hours, I sat at a small table answering a barrage of questions, some written, others spoken, and all designed to test my
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brain's function and its ability to hold thoughts and images. It was an office half the size of the neurologist's and in this office I answered questions supplied by a quiet, thoughtful woman who spent her days giving this test to scared people like me. It was a draining event both intellectually and emotionally. It was this test that produced results leading the doctors to confirm the unhappy diagnosis and I knew almost from the start I was not doing well. I had trouble remembering questions and images and words and I watched my mind grapple with things that had been without struggle only a few years ago.
The answers I gave to the questions were carefully scored as if I were in school. When I received the report from the psychologist who scored the test, I realized both she and the doctor observed clues in my behavior that alerted them to the early onset of my Alzheimer's. "The patient is a very pleasant and affable person," the psychologist wrote. "He is quite articulate but as the interview progressed, he began to experience increased word-finding difficulties.*'
Several weeks later, when the psychologist's assistant gave me the day-long test, she noted I was "cooperative throughout the testing and appeared to put forth maximum effort. He evidenced a marked latency to response and was slow in processing questions and instructions. He became lost in returning from the rest room to the testing room."
The report prepared by the neuropsychological evaluators minced no words, despite the accepted inconclusive method necessarily used to diagnose possible cases of Alzheimer's. "This 57 year old man," it began, "subjectively reports findings indicative of a cortical dementia and a pattern entirely consistent with early stage Alzheimer's dementia. The patient shows severely impaired short-term memory and poor episodic memory. He evidenced word finding difficulties both in conversational interaction and on formal testing, as well as some difficulty with numerical reasoning and calculations. There is some evidence that there has been a mild decline in overall intellectual functioning from a pre-morbid level with the
no
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patient showing some impairment in practical and social reasoning and judgment. This pattern of deficits occurs within the context of intact abihtv for abstract reasoning and conceptual thought, visuo-constructive function, and speed of information processing."
After weeks of waiting. I have been shoun the test documents. I have Alzheimer's, although the doctors, skilled with their tongues and disciplined with psxhiatry, are wary of making such sweeping conclusions with a disease that is notoriously difficult to diagnose in traditional ways. Instead they resort to clinical sophistr^ The psychologist who scored the verbal and uTitten tests I took ^TOte: "I do not beUeve this pattern of neurops-chological test performance can be explained solely on the basis of anxiety."
I remember being eighteen, stuck between youth and adulthood, an awfiil time of wony* and anxien.*. I was fresh from a failed attempt at college, caused by arrogance, fear, and homesickness. I spent most of the weeks at the University of Arizona pointing out "phonies," a game I picked up after becoming engrossed in J.D. Salinger's Catcher in the Rye. One good thing came out of ray stay in Arizona—meeting Bob Hurwin, a friend since those rough and eager days between being kids and adults. The most memorable event of that sojourn was backpacking one day in the rough mountain terrain outside Tuscon. ^'e got lost in the e'ening darkness and came out of the ^^Tldemess into a chicken ranch where a farmer met us with a shotgun.
Somehow my father hoped I would matriculate at some college and I kept that idea alive by entering American University in Washington, DC. I soon ran afoul of a professor who taught modem plays. I made the unfortunate mistake of raising my hand and asking too many questions. The professor asked me to come to her office. She accused me of being a communist planted to disrupt her class. She was far too wrapped up in the make-believe of theater to have a grasp on realit' so I took her advice and stayed away. Instead ot attending her class I went to movies with subtitles. If I
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couldn't pursue my interest in European literature in school, I could get it from the movies. I also tried to keep my hand in education by attending Italian language classes in the basement of a Washington, DC, Catholic church. This satisfied my father for a while.
There is no "typical" Alzheimer's patient. There is a tremendous variability among patients in their behaviors and in their symptoms. There is no way at present to predict how quickly the disease will progress in any one person, nor predict the exact changes to occur. We do know, however, that many of these changes will present problems for the caregiver. Therefore, knowledge and prevention are the key concepts to safety.
The basic changes that will occur in Alzheimer's patients are that they will have memory problems and cognitive impairment (difficulties with thinking and reasoning), and eventually they will be unable to care for themselves. They may experience confusion, loss of judgment, and difficulty finding words, finishing thoughts, or following direction. They also may experience personality and behavior changes. For example, they may become more agitated or irritable, or very passive. Alzheimer's patients may wander from home and become lost. They may no longer be able to tell the difference between day and night, thinking that the day has just started. They may suffer from loss that affects vision, smell, or taste.
- home safety for the alzheimer 's patient, azlzheimer's disease research center
I remember as a teenager seeing a tall, gaunt man striding along Wilson Boulevard. He carried a briefcase and had a long gait. I saw
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him at various times of the day walking at different places along the highway. He was mysterious and unlike anything I had seen. Although he was quite real and looked common enough, I began to think of him as some kind of apparition.
The memory and my wonder of this anonymous man has remained with me all these years. This memory returned to me today as I walked in the early morning along my familiar route. As I walked along I saw a man coming toward me and as he got closer I could see he was crying and his face was slicked with tears. As he passed me I looked carefully at him. He was ordinary in every respect except for tears welling from his eyes. After he was behind me, I turned for one last look at the sobbing walker, but he was not there. He seemed to have vanished as quickly as my memory. I picked up my stride and I felt tears bubbling in my eyes, obscuring my sight and wetting my face. I realized the man I had just seen crying as he walked along the sidewalk was me.
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