The woman taking care of me had a son about my age and we played together all day. One day we were pretending to be dogs and the play became too real. I bit his bottom and drew blood.
I was frightened and spent the rest of the day in a corner until my father came to pick me up. He was worried about the other child and was outraged by my conduct. The boy with the bandaged butt ran around as if nothing happened.
/ have no place to go now. I sit in a chair and try to capture fleeting moments of memories.
On 14th Street I began to discover the world by observing it and fingering it. There was radio, too, and it fired my imagination with stories of adventure, teaching me how to make new narratives of my own and dream myself into another world.
TO JOYCE
I watched you sleep this morning and I saw the past in clear colors.
I see you stroking the cat
on your lap and I see
the gentle, kind mother you are.
I see the kind woman who gives her heart to me in this dirty disruptive time.
Our struggles
are shared with many
unknown who thrash
as we do, and yelp at stars.
LOSING MY MIND
Even this sad, ugly battle
with my ailing humanity
will strengthen us
and give meaning to our life together.
After my Alzheimer's diagnosis, my cat Sabina established a new pattern that pleases me. Each night, she sits in the upstairs hall waiting for me to go into the bedroom. After I get under the sheets, she jumps on the bed in the darkness and lies down next to me. I think she is telling me something. She remembers when she came back from death as a result of Joyce and I making her want to live. I often choke with emotion when I whisper in her deaf ears: "Cat, I watched you come back from dying." It is a good thing to remember when you are in the same circumstance.
Scientists engaged in the design and development of clinical trials to test potential treatments for Alzheimer's face a number of challenges. One is the need to recruit large numbers of participants—those diagnosed with Alzheimer's, those earlier in the course of the disease (before clinical diagnosis), and healthy elderly—so that the effects of the drug being tested and its safety and effectiveness can be measured with confidence. Close collaboration with existing research and treatment facilities, such as the Alzheimer's Disease Centers and Alzheimer's Disease Cooperative Study sites, help to ensure a sufficient pool of potential study participants. Recruitment strategies being developed for trials such as the Memory Impairment Study will also help to ensure strong participation.
A second challenge is the need to incorporate into study designs the special characteristics of people with Alzheimer's. In many respects—cognitively, behaviorally, psychologically, and medically—this patient population is
THOMAS DeBAGGIO
different from patients who participate in clinical trials for other diseases. Because of their dementia, many may not even be fully aware that they are participating in clinical research. Extra care must be taken to accommodate Alzheimer's patients and protect their interests and rights. Their condition also means that family members and other care givers need to be included as full partners in the research effort if participation of the patient is to be successful.
Finally, the fact that several therapeutic drugs, such as donepezil and vitamin E, are now available to treat Alzheimer's has raised an important ethical issue about study designs in which one group of participants is given the investigational drug and the other group is given a placebo. Researchers are discussing whether this type of design should be abandoned in Alzheimer's research in favor of designs that compare new drugs against these existing therapies, or whether placebo-controlled trials should be continued because these therapies are not yet considered definitive standards of care of Alzheimer's.
- "progress report on Alzheimer's disease," national institute on aging, 1999
For several days after I was diagnosed with Alzheimer's, there were flooding moments of tears. Joyce tried to comfort me with hugs and soft words.
My tears did not last but Joyce began to stay up ever later until I met her going to bed in the morning. I did not look, but I am sure her pillow was wet with her own tears.
After the initial shock there were friends to be told, especially those who worked for us. There were our relatives. And finally, all the fine people who bought plants from us over the years; I could not neglect them. I told them what was happening to me through a regular column I wrote in the fall catalog. There was a great re-
54
LOSING MY MIND
sponse and I was in tears many times during those days because of their sweet thoughts and remembrances. It was a time I never expected, a period of hugs and fond wishes from people whose names I did not know.
A strange thing began to happen. Although some friends really didn't want the bad news I brought them, they sometimes felt slighted if someone told them about my predicament before I got around to informing them. It was subtle, but it was there, and I was surprised that even the timing of bad news was a way some friends judged their place on the imaginary pecking order of my friendship.
>s.^
With the war's end, automobile production resumed and life returned to normal rhythms. Our family joined the upward mobility of the middle class, spurred by postwar industrialism. Air conditioning appeared in barbershops and other stores. A glittering piece of hardware called television made its debut in middle-class households. These became the anchors of my world. The biggest changes were subtle and lasting. A simple world of struggle began to embrace complexity and comfort. One holdover of the world wars, the archaic Blue Laws, continued to close many businesses on Sunday in Virginia. The state's small-town ways still maintained racial segregation.
I have wasted precious weeks trying to put the right words together to tell a story of a man entangled helplessly in his own unwanted death. I have searched for the correct words to announce my coming demise. Why am I so preoccupied.'* A better approach is to get away from this storytelling and self-indulgence and go out and do something to benefit mankind. Better yet, go out and do something I have always wanted to do.
THOMAS DeBAGGIO
The only problem is I don't remember wanting to do anything other than water my plants and get soaked with sweat in the greenhouse and then come up to this little air-conditioned room and sit before this computer screen and tell a story that could be mine. I don't remember who I am when I write.
I often recall a thought or action a few minutes after it occurred, but a flood of memories from long ago bob from the depths and restore the present loss.
The strain of caring for a spouse with Alzheimer's disease often puts a significant burden on the caregiver that can negatively affect both his or her physical and mental health. Based on previous findings suggesting that women may feel more of a strain from care-giving than men, researchers in a new study measured the behavior and function of 37 male and 39 female Alzheimer's patients, and compared those findings to the burden reported by their respective spouses.
Female caregivers reported a 55 percent higher burden than male caregivers; correspondingly, male Alzheimer's patients had 48 percent higher scores on tests of dysfunction than female Alzheimer's patients. Behaviors that placed excess burden on the caregivers differed by gender. Women were more likely to feel burdened by aggression, while the burden in male caregivers was exacerbated by more psychotic behaviors, such as hallucinations.
Although conclusions cannot be drawn from this small study, it brings up a number of issues worthy of further examination. For example, what causes gender differences in the course of Alzheimer's, and how do these affect caregiver strain.^ Which behaviors are most difficult to deal with.'* And most importantly, it emphasizes that the
LOSING MY MIND
needs of the caregiver must be addressed throughout the patient treatment.
- ANNALS OF T
HE ROYAL COLLEGE OF PHYSICIANS
AND SURGEONS OF CANADA, FEBRUARY 1999,
JOHNS HOPKINS WHITE PAPERS
My family saw our favorite films at home on a white bedsheet hung on a wall. There were films of me as a cowboy saddled on my saw-horse, and eventually films of Mary Ann, too. There were pictures shot in Iowa, especially the one with my grandfather showing off his dusty brown sedan with running boards. The scariest part was Grandpa riding a horse on a dirt road as a truck passed between him and the camera, as the film ran out.
I waited with anticipation to see the films of my parents' honeymoon. It showed the newlyweds throwing snowballs at each other. There were also scenes of my grandmother, who accompanied them. The films were relics as holy to me as any held by a church. Their rough amateurism reminded us where our hearts belonged.
As the plant-selling season ground to a halt under bright skies filled with merciless heat, the days emptied of meaning and customers. Now the days stretch through hours of boiling sun and they contain only a thin, winking purpose that some scribbles will become words to form glittering paragraphs to march into books. It is in these lonely hours that words sing to me.
My cousin called yesterday and on learning of my predicament immediately prescribed ginkgo, a tree extract. She is not a doctor but she reads widely the popular books on food and health. She is among those who view food as medicine. She said that after she took ginkgo, she always felt better. I told her my doctor also recommended it. I don't feel anything after taking individual pills or the
THOMAS DeBAGGIO
full panoply. I don't even feel as if I am near death, although I know I have only a few years before I become a hatstand.
This conversation about pills reminded me of the relevance of small, familiar things, how they comfort and steady our lives. I read a poem by William Carlos Williams over forty years ago and it struck me the same way. It was a poem about the importance of small events. I admired it for its simple, tightly knit verse and its message. At the time, I wrote a similar poem, now lost, that won some kind of award for high-school poets.
THE LITTLE RED WAGON
So much depends upon a red wheel harrow glared with rain water beside the white chickens
- WILLIAM CARLOS WILLIAMS
I Started walking again and each morning I stroll three easy, flat, familiar miles, always the same route. In the past, when I took this circuit, I came home with an invigorated mind full of the images and words eager to preserve for later use. Few memories have been freed on these walks recently.
Walking alone on quiet, dawn streets exercises my body and invigorates my mind with the world's wonders, and mankind's. I have traditionally taken paper and pen with me to report my thoughts on these sojourns, but I have added a small pocket recorder to catch flyaway words and ideas. These mornings are often full of moments of remembered elation and sorrow, the two emotions that balance memory.
I grew into a skinny kid and became the butt of jokes, tortured by children in the neighborhood who focused on my hairy arms and legs, and thin body. Older boys wrapped their hands around my
LOSING MY MIND
wrists and bellowed about how tiny they were. They made fun of the splotchy red birthmark on my left wrist. In self-defense I wore long-sleeved flannel shirts and blue jeans year-round no matter the discomfort of summer heat.
Those early days of childish torture set me on a path of introspection. As early as age four or five I became tentative and withdrew into a world of imagination. Radio, and later television, became my rescue.
I don't know whether computers can have Alzheimer's, but last January, while I was working on the spring plant catalog, the computer got out of hand. A little "t" showed up and began replicating itself until all the space was filled with "t's." I was afraid to use the machine for several weeks. I asked several people in computer stores what it might be and nobody could say for sure. Rather than bring the misbehaving machine in for service, I let it rest. When I finally opened up the computer to start working again, all the little "t" terrorists were gone. Too bad my brain can't be rested and return to its former self.
It was not long before my grandparents began to visit Virginia. They came to see this Eastern land and its differences, and make sure their children were not harmed by it. Soon my family was making annual sojourns to the flatlands of the Midwest.
On these summer trips to Iowa, I experienced sleeping on a moving railroad train and saw the differences in the Midwest and the East Coast. My little eyes opened in wonder at the dark, rich, flat land of Iowa and Illinois (my cousin Clark lived outside Chicago) where the corn grew so tall a three-year-old thought it reached the clouds.
lam suspended in time, hanging by a rotting thread of memory.
My grandfather thought he had retired from his restaurant but it was not to be; his daughter died suddenly, leaving two small chil-
THOMAS DeBAGGIO
dren. I remember the night the phone call came from Grandpa. I watched my father as he listened quietly to the voice on the phone. As he cradled the phone to his ear, he was overcome with tears. I had seen anger and sorrow before but I had never seen anything like this. I had never seen an adult cry and didn't know what to make of it.
When he regained his composure, he said to my mother, "Dorothy is dead." Soon after, my grandparents moved back into town, ending their retirements, and returned to the restaurant business. They took into their home my Aunt Dorothy's husband and their two young children, Suzy and John.
Alzheimer's silently hollows the brain and fills it with death. Even memory is burned, leaving nothing to suck for internal substance.
Until now, scientists always thought neurons were formed only during the fetal period and a short time after birth. Once a person had his or her full complement of neurons, that was that—the adult human body could not create new ones.
This past year, that idea changed dramatically as a result of research supported in part by the National Institute of Aging. Building on work in rodents, researchers at the Institute of Neurology, Sahlgrenska University Hospital, Goteborg, Sweden, and at the Salk Institute in La Jolla, California, discovered that the human brain does indeed retain an ability to generate neurons throughout life. In this study, cancer patients received injections of a compound called BrdU, which was used for diagnostic purposes. The BrdU-labeled neurons and glial cells grew in the hippocampal region. This meant that these adult human brains contained dividing neuronal stem cells (the specialized cells that generate neurons and glial cells).
LOSING MY MIND
Although more research will be necessary to understand the biological significance of these findings, they are provocative and may have an enormous impact on future aging research. By demonstrating that new neurons can be generated in the adult brain, it may now be possible to simulate intrinsic brain repair mechanisms to replace neurons and glial cells lost through age, trauma, and disease. Because Alzheimer's and Parkinson's diseases, strokes, and spinal cord injuries are all characterized by neuronal dysfunction and death, finding ways to stimulate the formation of new brain and spinal cord neurons may one day lead to novel therapeutic approaches for these and other conditions.
- "progress report on Alzheimer's disease," national institute on aging, i999
I was five when I started Catholic school. Youthful scholarship was not what won me an early start; it was the chance of birth. To start public school in those days, children had to be six years old before the end of November. My birthday is January 5th.
There was no cafeteria at St. James School and lunch was eaten at your desk. I wanted the same thing every day, two slices of white bread from the grocery store slathered with peanut butter and jelly. This sandwich was cut into four equal pieces in accordance with the directions of the nuns. The sandwich, wrapped in wax paper, went in a tin lunchbox, along with carrots carefully cut and scraped in accordance with the nuns' request. My mother poured milk into a little thermos, corked it, screwed on the metal
top that doubled as a cup, and away I went.
v;.-.
THOMAS DeBAGGIO
It is in the lonely hours that words sing to me. I have been thinking of my obituary all day, wondering what will be written, if anything. At one time in my short newspaper career, I wrote obits, as thankless a job as I ever had, but it was good training in the long run. If I write my obituary notice now I can die knowing I had the obit I thought I deserved. I may not need to jot down those few words. This book may become the longest obit ever written.
Going to school was important, I was told, but school made me anxious. St. James was many miles away and my parents did not have a car. I walked half a mile and crossed Washington Boulevard, a busy thoroughfare, to where I was picked up. After a few trial runs with my mother, I handled the walk by myself. From the boulevard, I was driven to school by strangers, a family with children from our church who lived nearby.
Once in a while I hear wind whistling through my brain.
Individuals who have a memory problem but who do not meet the generally accepted clinical criteria for Alzheimer's are considered to have mild cognitive impairment. They are becoming an increasingly important group for Alzheimer's researchers because it is now known that about 40 percent of them will develop Alzheimer's disease within three years.
A recent study, conducted by researchers at the Mayo Clinic Alzheimer's Disease Center in Rochester, Minnesota, broke new ground in this area by confirming that Mild Cognitive Impairment is a distinct clinical entity different from mild Alzheimer's and from normal age-related changes in memory. This study involved three groups: healthy older people, people with mild cognitive impairment, and patients with Alzheimer's.
LOSING MY MIND
The groups were followed over time and compared on demographic factors and on several different measures of cognitive function. Results showed that the main difference between the healthy study participants and those with mild cognitive impairment was in memory abilities. The mild cognitive impairment participants and the Alzheimer's patients had similar memory impairments, very much worse than the healthy participants, but Alzheimer's patients had other cognitive impairments as well.
Losing My Mind Page 6
