The Admiral was the future the war postponed. My family was among the first in the neighborhood to have television. It was to change my imaginative life in ways it took years to understand.
Test patterns ruled the air waves most of the day but in the evening there was something to see—for a while. In time more movies were shown, especially during the day. Cowboy pictures from the '30s and '40s were most common but science fiction programs soon rivaled the Westerns. The images, historic and otherwise, flickering from the set primed a young boy with daydreams and imaginative play.
We are foolish, those of us who think we can escape the traps of aging. I was one of them, dreaming of a perfect and healthy old age such as the one lived by my grandparents. Now, at fifty-eight, I realise the foolishness of my dreams, as I watch my brain self destruct from Alzheimer's.
Following the success of the herbal memory aid ginkgo biloba, several other natural remedies with similar claims to improve mental performance have recently become
THOMAS DeBAGGIO
available. The more prominent additions to the burgeoning market of alternative memory treatments include phos-phatidylserine, vinpocetine, and huperzine A (hupA). Sold as dietary supplements, these natural agents are popping up as ingredients in a number of memory boosting products—there's even a chewing gum with added phos-phatidylserine that promises to "switch on the brain." Like ginkgo, however, there is only limited evidence the newest remedies can ward off age-associated memory impairment, let alone severe dementia or Alzheimer's disease.
But at least one new agent, hupA, may stand out. Derived from the moss of Huper^ia serrata (an herb that grows well in the outreaches of China), compounds of hup A have been used for centuries in Asia as a remedy for fever and inflammation. HupA gained increasing attention in the U.S. because it appears to have a positive effect on one of the characteristic abnormalities in Alzheimer's.
HupA has shown a positive effect in animal models, but only one small human trial has been published to date, conducted in China. Researchers randomly assigned 50 patients with mild to moderate Alzheimer's to 400 micrograms per day of purified hupA extracts for eight weeks. Another 53 subjects with roughly the same disease symptoms were given a placebo during the same period.
By the end of the study subjects who took hup A had significandy better scores on tests of memory and cognitive function than the placebo group. Overall, hupA was associated with a 58 percent improvement in symptoms, compared to 22 percent with a placebo. No serious adverse events occurred from using hupA, although the herbal remedy caused nausea, vomiting, or diarrhea in nine patients. Additional trials of hupA are currently under way.
Although hupA appears to work in a similar fashion to cholinesterase inhibitors, this does not mean that the herbal
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remedy is effective or safe. Only further studies can prove its usefulness. Moreover, cholinesterase inhibitors have shown only a modest effect on Alzheimer's patients, and there is no indication that this line of therapy will ultimately forestall memory loss. Even so, the proven benefits in inhibiting cholinesterase imply that hupA could have at least some therapeutic value.
- THE JOHNS HOPKINS WHITE PAPERS, 2000
I have met, through the mail, a number of caregivers, wives, and husbands, brave men and women with hearts of gold. Their stories have a gende, uplifting quality and I cannot let pass the story Pamela Stewart sent me.
She wrote: "As my husband, also a writer and avid reader, lost his ability to read himself, a young man named Cris, a graduate of the Iowa Writers Workshop, read aloud to him. Mark occasionally corrected his pronunciation. One day, as a joke, Cris said, 'And how do you spell that. Dr. Stewart.'^' To his and my astonishment, the word was spelled out correctly. Such are the quirks of this illness."
Every day is new now, with little remembrance of the day before, but with enough memory retained to know there was a yesterday. This is a new way to live and it takes getting used to.
Words, even unfamiliar ones, are more helpful now than ever before because they sometimes remind me of the past. I now lack enough mental security to be sure I remember memories of actual events; they might belong to someone else and I have stolen them for the moment, unknowingly.
I am less certain of everything, but I do not feel like a child with no history. I have a clear sense of history, I just don't know whether it is mine.
k
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It is now about four months since the Alzheimer's diagnosis and I remain bewildered. I do not think the Aricept, about all there is for the medical profession to prescribe, is doing much to slow my memory loss.
I started writing immediately after the diagnosis and I sense a loss in my ability to call up words on demand, and I think I have suffered some loss of vocabulary and spelling functions. Is it likely the expensive Aricept failed me.'^ I wanted to find out what to expect from the drug and I went back to the 1999 Johns Hopkins White Paper on memory and reread the condensation from the magazine Neurology. In a clinical study reported in the magazine, 473 patients aged fifty and older received a placebo of 5 or 10 milligrams of Aricept, currently one of the few pharmaceuticals available. Every six weeks the patients were tested to determine whether there was any loss of memory, language, or reason. The results showed 80 percent of the Aricept patients had no cognitive loss. Among those who received no medicine, 57 percent had no memory loss. This appears to indicate the medicine was effective only 23 percent of the time.
Among those patients who had slight improvement on a single cognitive test, those ingesting the lo-milligram tablet had a slight improvement for 54 percent of the patients. At half the dose 38 percent of patients had slight improvement. Of those who got stuck with the placebo, 27 percent showed slight improvement, indicating that the large dose might account for only 27 percent effectiveness and the lower dose for only 11 percent effectiveness. In the case of slight improvement, it appears that the placebo was as effective as an expensive medicine.
Six weeks after the study's completion, the subjects were tested again. Whether the individual took the placebo or the Aricept, cognitive function scores were similar.
In a disease where small gains are important, this has some meaning but to me it is hardly a start at licking the malady. This is a big win for positive mental attitude and if that is the case, I will have to wipe the frown off my face and show my teeth more often.
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My family had owned the Nash for a short time before we drove it to Iowa on a two-week summer vacation. Mary Ann was small and squirmy and sat in the back seat with my mother; I sat in front with my father. There were few motels then and my father avoided stays in people's homes that were converted into hostels. He hated the lack of privacy in such situations. He decided camping was a better, cheaper way to handle the accommodation problem. On his first camping trip my father discovered camping with two small children was the worst way to travel.
To keep Mary Ann and me content on the long three-to-four-day drive, my mother prepared special gifts, toys designed to keep us occupied and quiet. Along with the games were stories of Iowa in the days before my birth. No matter how many games and stories were told, it was still always hot and uncomfortable.
There is a wide emotional difference between knowing you will die one day in the future and living with the knowledge you have a disease that slowly squeezes the life from you in hundreds of unexpected ways, and you have to watch it happen while those who love you standby unable to help you.
A letter came from Maureen addressed to Joyce. It was the first time she had not telephoned me directly and I wondered what was in the letter and waited for Joyce to open it. After she read it, Joyce handed it to me. Maureen heard gossip I had Alzheimer's and she could not believe it and offered to put an end to the rumor.
I sat down and wrote to her immediately so she knew firsthand what was true. A few days later I clicked on my answering machine and Maureen's distinctive voice
was talking to me and before long she was crying on the telephone. I called her back immediately but there was only an answering machine to answer her telephone. Over the next week I tried to reach her until she answered the phone and we had a nice conversation about many things and I learned she had lost several close friends in the past year, all about my age.
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There was great sadness in her voice and finally tears came and it was all I could do to keep from crying. It was then I realized how many people I touched in my life and how important human connection is. I once thought a person could live alone and devote a life to the mind. I outlined a play with such a theme. The main character was a man on display at a zoo. It has taken thirty years for me to realize why I couldn't finish the play.
Page one headline, The New York Times, October 15, 1999: "Brain May Grow New Cells Daily; Princeton Study on Monkeys Challenges Long-Held View." I wept with joy this morning when I read those words. There might be a chance for me to live. The discovery was made by Dr. Elizabeth Gould and Dr. Charles G. Gross.
"If indeed the brain is constantly renewing the cells in the cortex, hippocampus and maybe other areas," the article reported, "the prospects for learning how to repair the aged or damaged brain begin to look much more helpful. Degenerative diseases of the brain are rarely defined by loss of nerve cells." Although diseases like Parkinson's affect specific areas of the brain, it might become possible to channel new neurons into the areas of disease. "This is pie in the sky," Dr. (Eric R.) Kandel (a leading neuroscientist at Columbia University) said, "but at least there is now the possibility of thinking about it."
I hope they do a lot of fast thinking.
Going to the bank on Saturday with my father to deposit his paycheck got me thinking about money and how nice it was to earn it. At my age, this was an open invitation. A Tasty Creme doughnut route was available and I took it—going into it with early dreams in my heart.
Every Thursday the company brought boxes of doughnuts to our house. They were paid for on delivery, no return. My job was to go door-to-door selling them to neighbors. "Wanna buy some doughnuts.''" was my sales pitch.
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What my father and I failed to foresee was the number of glazed doughnuts the family had to eat. The neighborhood interest in doughnuts was minimal. My goal was to go to the bank with my father every week and put money into an account of my own. My father had to buy a lot of doughnuts to make that dream come true.
Alzheimer's sends you back to an elemental world before time, a world devoid of possibility and secrets. It is a world of insecurity where the certainty of words and the memory of events is unstable. It is a world of abject insecurity and tears of frustration.
I sense reality slipping away, and words become slippery sand. My life is turning into a dun-colored kaleidoscope. I think it will be only a matter of months before my life becomes a nightmare and the world becomes a freshly unknowable place where even the simplest things are difficult because they are unrecognizable.
I started three-mile daily morning walks because there is little physical exercise in writing. The walks cover familiar territory and I amuse myself trying to spot small landscape changes every day. It is a way to test and keep track of possible brain deterioration.
There is usually little to be said for the public scribbles found on the sides of buildings and on the sidewalks, but this morning on my daily walk I came across a new one neatly engraved when the concrete was still wet on a new area of sidewalk. It is the first one I thought worthy of remembering. The lettering was careful and unhurried and it was obvious whoever wrote it thought carefully before committing to the deed. In perfectly spaced letters of knife-thin characters this artistic scofflaw wrote: "artists live forever." It was the first real truth I can say I have physically stumbled across.
My husband seems terrified that I am going to leave him. He says he knows he's not the man he used to be. Sometimes he berates himself, saying things like "I don't know
THOMAS DeBAGGIO
why you would want to stay with someone like me," and in the next breath begs me to never leave. We talk about the need for reassurance and the need to make the person feel safe in the support group I attend. I need reassurance and to feel safe too. It does help to hear that his behavior, which can be so draining, is because of the Alzheimer's.
We have had a good marriage over the years. I never dreamed I would have to spend so much time reassuring him of that. The greatest pain is that he doesn't remember so many of those special times. It is like losing a part of your history.
- C.S., FROM LESSONS LEARNED: SHARED EXPERIENCE IN COPING, DUKE UNIVERSITY ALZHEIMER SUPPORT GROUPS
More and more I find myself going back to books I read first twenty-five or thirty years ago. It is a weak attempt to recapture a part of my life I still want to live in me, a part of me not devoted to earth and herbs. In those long-ago days there were gardens but they were there by necessity; we needed the food.
Those were days of words and stories, paint and clay; days devoted to lovely creativity and experimentation, a time to test imagination and live in it. It was the worst of times and the best of times.
Now I wish I could have those days again in their full, expansive glory, but I am afraid to seek them because they were days of intense insecurity. That may explain why I took to books of a remembered time as a place to discover new creative energy and lost memories.
In a few minutes I can pull down from my library some of my favorite books of the era. Nearly a dozen are books by Henry Miller, many of them bought in Mexico with their fine red bindings; others I had to sneak through customs during the time Miller's books were banned in the United States: Tropic of Cancer, Tropic of
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Capricorn, Black Spring, Sexus, Plexus, The Air-Conditioned Nightmare, and the wonderful Big Sur and the Oranges of Hieronymus Bosch. There are other books such as Jack Kerouac's On the Road and The Subterraneans. All these books were hidden in my adolescent bedroom for fear my parents might find them.
There were other books, difficult and dense, Watt and The Un-nameahle, both by Samuel Beckett, a sly wordsmith of honor. Kenneth Patchen was another light I lingered over, especially Sleeper^ Awake and The Journal of Albion Moonlight; and of course there was James Joyce's Ulysses, a book studied carefully; and the absurdist plays of Eugene lonesco, which turned the world upside down. There were also the tender words of William Saroyan, an immigrant boy trying to understand a new world. I felt a kinship there I never quite understood; he wrote about me and the way I felt, and that was enough. I often revisit the political world of I.F. Stone. In the '60s he was my favorite political writer. He was a muckraker and I admired him greatly and learned much from him.
I have difficulty reading some of these books today, not because my eyes are bad or the words are so familiar but because they outline a world I never fully entered; they helped me construct a fantasy world of writing adventures. These books pleased me and educated me; they provided an adult version of childhood fantasy. After a while I was scorched by the literary heat of my book world, and I turned to the earth itself for sustenance. I found pleasure in dirt, and my creativity became crippled.
Lately I have made attempts to regain the creativity of my youth but progress is slow where the mind was once quick. There is nothing so comforting for me now as sitting in the silence of an early morning and listening to my mind spin yarns and create sentences in stories. There was no livelihood in that world of words years ago and to eat I gave it up. Those days of rich memory stayed with me and, now in my waning years, I want to return to an earlier time and join the fun and delight of a daybreak, and whistle at the moon.
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It is not longing for the past from which I suffer, it is the desire to waken the person I was when I found enjoyment in artistic expression, a Hfe I suppressed because the risks were so high.
There were many things my parents wanted to do to their
new house on 14th Street. A flagstone terrace soon replaced the wooden steps as an entry to the front door. My father designed the long, wide flagstone entry and built it on weekends as I watched the new skills he possessed. I was proud of my father and went with him to the quarry in nearby Falls Church to select the large earth-colored stone.
Later he built a carport for the new Nash. It was situated to the right of the house next to the wire fence holding grapevines. For this job my father built an open wooden structure with a flat roof. He made a large wooden box and mixed the concrete in it. Each night after dinner, and on weekends all day, he hand-mixed the concrete and colored it. The carport is still there, half a century later.
I lost my driver's license Sunday. The last place I used it was a Staples store. Somewhere between the store and Monday, the brown leather billfold vanished. The process of obtaining replacements for driver's license, social security card, and medical card appeared daunting, but of course it wasn't. It took less than an hour, including travel time. Did I mention the loss of seventy-five dollars.'^
The episode with the missing billfold sent me into the past. As I hunted for the data required to get a replacement driver's license, I came across the two passports Joyce and I used when we went on our belated honeymoon to England the year we married, 1964. I did not immediately recognize the faces on the passports because they were so young and unmarked by time. Joyce looked into the camera with sweet assurance; her beautiful face was young and eager. It made me remember why I married her even after her mother told me she was no good. Her mother also did not want a "dirty wop" in her house.
I did not recognize myself but it must be true because my signa-
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ture was above the picture. The signature had not changed markedly but the face was unknown and nearly expressionless. If there was any life in the face, it was in the dark, piercing eyes staring ahead intensely, which marked me then and now. It is a look that I have been told is evil and humorless. I had all the self-confidence of an Iowa farmer in New York City.
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