The large rosemary bushes were awash with blossoms, splashy blue and subtle white. These were plants beautiful to observe in the spring when winter was mild, and as I inspected their small flowers and richly aromatic foliage, I was conscious of the plant's long history of medicinal use, an irony that was not lost on me. It was said that rosemary was for remembrance.
I called the neurologist to whom my family physician referred me and made an appointment. Several weeks later, I sat in his waiting room with people I knew had to be sicker than me. They were moaning and groaning in obvious pain and discomfort. There were people on crutches and in wheelchairs. The whole place was full of the infirm, the out-of-shape, the terribly ill, and they were all much older than me or in more pain.
In comparison I looked the picture of health and I wondered what they thought of me in their midst. If I had not been dressed so casually, they might have seen me as a salesman come to sell some ointment to the doctor. They must have wondered why I was there and that thought captured me. I was floating in a sea of doubt and I
LOSING MY MIND
did not know what the outcome of this doctor visit would be, and that may have been the most troubling thing in my mind that afternoon.
I kept watching the clock. Waiting in a neurologist's office must be one of the modern world's more nefarious tortures. The technique of making a patient wait in a doctor's office is something that must be taught in medical school, a way to assure the patient the doctor is in charge and to telegraph how busy and important he is. It may also be a sign of how disorganized and overworked doctors are.
Finally a man in a white coat came into the waiting room and called my name. He had a hurried, brisk manner and he ushered me into a cramped, spare little office. He sat down at his desk and motioned me into a chair opposite him. The only humanizing thing in the room was a set of abstract watercolors on paper pinned to the wall next to the doctor. They turned out to be the work of his children.
The neurologist chatted for a while, outlining what he would do that day during the office visit. He began asking a few questions, gathering a wide array of personal information from me. As I talked he kept his head bowed over his notepad, writing with quick assurance, filling it with a dark, wiry scrawl.
"Mr. DeBaggio is a fifty-seven-year-old right-handed gentleman referred ... for evaluation of memory loss," his notes say. "Patient has noted a problem with naming objects, onset about one-and-a-half years ago. Initially felt it was stress related but now is not sure. He is in the greenhouse-plant business and is having trouble remembering plants' names. Also however, may think of something that he needs in another room; may go into that room but then forgets why he went there. Believes this goes along with the naming problem."
The questioning continued for some time, covering my past medical history. The doctor learned what vitamins I took. Under family history/social history, he noted: "Married and has one son. Does not smoke. Drinks one-half glass of wine with dinner. Mother died of colon cancer and father died of heart disease."
THOMAS DeBAGGIO
The doctor stood up and walked over to the examining table and picked up a white hospital gown that lay there. He handed me the garment and asked me to undress and put on the gown. He left the room, saying he would return soon.
I changed into the hospital gown, a piece of clothing with which I was totally unfamiliar. It was style-less and not cut for warmth; the back was open and the room was chilled by air-conditioning. Garments like hospital gowns were undoubtedly designed to humble any person wearing them. I sat on the examining table, swinging my feet, waiting for him to return.
When the doctor returned, he asked me to stand and commenced an abbreviated physical exam. "Pleasant gentleman in no acute distress," his notes read. "Normal body habitus. Vital signs revealed a blood pressure of 140/80 with pulse of 70 and respiratory rate of 12. . . . Mental status resting revealed patient to be awake and alert."
Soon the type of questions changed direction and began to explore the workings of my mind in simple quick ways. Did I know where I was; what year was it; what month and day of the week.'* Then the doctor asked me to name the presidents of the United States, starting with the present officeholder and working backward; I got as far as Carter and he asked me to stop. "Simple and more complex calculations were intact," his notes say. "Could not reverse a five-letter word but could reverse a four-letter word. Short-term memory was three out of three objects immediately and one out of three objects after five minutes."
The most humiliating moment of the day occurred when I was asked to count backward from 100 by 7's. "Got serial sevens cor-recdy back to 86," the neurologist noted, "subsequendy said that he forgot what we were doing and then recalled on his own and then got serial sevens back to 58 correctly." That first tentative look at how my brain performed chilled me, no matter how much I made light of the methodology. Of course, neither of us knew for sure what caused the problems. The exercise illuminated the extent of
LOSING MY MIND
how uncertain my memory had become and I found myself thinking I might be in deep mental trouble, but I dared not jump to conclusions quickly in a matter this serious.
There was an avoidance by the neurologist of the dreaded word "Alzheimer's" but it was clearly one of the options being considered. It was necessary, however, to search for other causes that might also produce similar conditions and he told me his secretary would get in touch with me to set up appointments with other specialists.
Later, when I read a copy of his notes, I came across what the neurologist's initial conclusion had been. It was chilling. From just a few simple tests, the neurologist wrote the impression: "Mild dementia versus age-related memory loss plus anxiety. Suspect the former, rule out the latter. Rule out treatable cause."
Dementia is a word used by specialists in this field to define loss or impairment of mental powers from organic causes, often Alzheimer's. It was clear that the doctor detected from his examination the familiar opening stages of Alzheimer's, but he wanted to rule out other causes. Somehow I remained optimistic.
Before I left the neurologist, he wrote an order for more blood to be drawn from me and I went downstairs and waited a few minutes. I was escorted into a small room and a nurse took four or five additional vials of blood.
Within a few days, the doctor's efficient secretary called to tell me she had made a series of appointments for me with specialists who met the approval of my HMO and I prepared for my round of testing.
Two types of Alzheimer's exist: familial Alzheimer's, which is found in families where Alzheimer's follows a certain inheritance pattern; and sporadic (seemingly random) Alzheimer's, where no obvious inheritance pattern is seen. Because of differences in age at onset, Alzheimer's is further described as either early-onset (younger than 65 years
THOMAS DeBAGGIO
old) or late onset (65 years or older). Early-onset Alzheimer's progresses faster than the more common, late-onset forms of Alzheimer's.
- "progress report on Alzheimer's disease," national institute on aging, 1999
I have talked to my son Francesco often about what I am going through. I realized the other day my openness may be a large problem for him. He must be troubled by what he sees happening to me, the slow march of disease that sends me stuttering for words. Yet he is quiet about it, watching me carefully, and searching inside himself for some early sign that my Alzheimer's was passed on to him.
When I shut my eyes at night, before I go to sleep, I am given what I imagine is a tour of my brain. Pictures of the day pass before my closed eyes and I am treated to an abstract phantasmagoria: bouncy colored lights, mountains in fantastic colors, pictures that resemble the landscape of the moon seen from a slow-moving vehicle. It is as if a television camera tuned in my brain to show me sights streaking across an inner sky. It is a moving canvas I see on which a painter delights in mixing colors and then throws them into my sleepy mind. Some nights the visual pyrotechnics are so strong it is
difficult to get to sleep, something that has never happened to me before. Eventually the random shapes begin to take form and recognizable objects and scenes appear. I detect a story but then I may be asleep, Oram I.'^
My family was surprised that the white house on 14th Street held wartime history. Mr. Cushman, the former owner, was an air raid warden and left his heavy white metal hat used during lights-out warnings. I never found the whistle but I was glad when the air raid warnings stopped and normalcy returned.
LOSING MY MIND
Almost all familial Alzheimer's known so far has an early onset, and many cases involve defects in three genes located on three different chromosomes (Chromosomes i, 14 and 21). For example, if a person inherits one of these mutated genes from his or her father or mother, then that person is almost 100 percent certain to develop Alzheimer's at an early age.
- "progress report on Alzheimer's disease," national institute on aging, i999
lam writing in a panic, racing against an insidious disease that gobbles memory and ends up destroying life.
^.
Joyce is much more than my wife, and always has been. Primarily she is a printmaker. As an artist, she is a trained observer; minutia sometimes appears to be her first love. She scrutinizes me now more than she did several years ago.
At times she is my translator and word finder when my mind slinks away from the job it was hired to do. At this stage in the disease, life is normal; only in subtle ways am I different than I was a few years ago. Joyce and Francesco pick up these subtleties in a way that even friends might not. What is happening is hidden inside my brain and it will take time for it to be fully noticed.
Joyce grew up in a family of secrets and few words. She was not scared by her father's or mother's ways, but stripping to her soul in public is not her style. I am in the early stages of the disease and with few minor exceptions our lives are not much different than they were fifteen years ago. I drive the car, prepare my share of sup-
25
THOMAS DeBAGGIO
pers. go grocers" shopping, and do chores, but it would be inaccurate to say that Alzheimer's has not touched us.
The little white wooden structure next to the house became Santa's workshop during October. November, and December. My father spent most ot his weekend and much time after dinner closeted in his workshop during this time. He made everything from shiny wooden blocks in a variety of shapes to a large and elaborate doll-house. The dollhouse was for Mary Ann, for whom my father made tiny furniture and carpeted the floors. I received Tinkertoys, Erector sets, and model trains, the kind of toys introduced to a generation of boys to ignite their interest to change the world around them. Mary Ami received baby dolls, miniature cooking utensils, and clothes made by my mother. It was during this time my father began to place large, colorful Christmas scenes on the front lawn.
A new world greets me every morning now. I will never see myself or the world the same way. I must cling to optimism and avoid depression, but today I am so shattered I can hardly hold a word, phrase, or sentence long enough to acknowledge it and put it on paper. It is as if I received a death sentence and I have to begin a circumscribed life in a prison of fear. I see myself differently, almost as if a death ray penetrated me. I look in a mirror and discover I am crvdng.
My father and I discovered tin juice cans neady stacked in the white shed next to our house. We flattened them and my father took them to the grocery store to exchange for additional ration stamps.
I am still stumied by Joyce's reaction to my diagnosis. Though it is no wonder, she sprang at the doctor verbally. She heard a stranger abrupdy inform her to prepare for an end to her life with me. a physically agonizing termination and brutally drawn out. Lacking was an explanation of his conclusions, what was known and what
LOSING MY MIND
could be done. Instead, fires of miscommunication burned out of control. Sorrow without tears is an empt}' emotion. A scream is worth a thousand words sometimes.
Jovce was brave with echoes of her davs on picket lines, and anger filled her body with consternation. She erupted with swinging questions. She wanted explanations, not statements that the doctor didn't know the person who had conducted the tests. It wasn't that she didn't believe the tests, she wanted knowledge to give her understanding. She was not going to let this M.D. off the hook with a smile and a prescription. I watched as she swirled in early bereavement and lashed out for answers and cures that were the province of darkness.
My life was imaginative, rich, and filled with make-believe cowboys. From nearly the day I moved into the house on 14th Street in Arlington, I rode sawhorses into the dusty West. I was loaded with Western regalia, especially red bandannas. A cap gun was bolstered on my thigh, and a big wide-brimmed hat kept the sun from my eyes.
This eager, athletic imaginative Ufe was fueled by radio programs filled with ^ estern derring-do. Tom Mix, Tex Ritter, Hopa-long Cassidy, Gene Autry, and the Lone Ranger were just a few of the fighters for law and order in that imaginative Wild West of radio drama. During the day I galloped without horse across the grass of the neighborhood, substituting my small legs for the horse's.
Soon my infatuation with cowboys languished and I jumped from the Wild West to a wider plane, intergalactic space with Captain Video.
Words slice through my mind so fast I cannot catch them and marry them to the eternity of the page. There is nothing else in my life now but this disease that leads to death. I am fixated on It, captured by it, and I can V win back my freedom.
Lives coast on memory.
27
Ai
THOMAS DeBAGGIO
It was difficult to find basics like sugar and meat in the grocery store. Botdes of real maple syrup were scarce but necessary for pancakes. One day my father took me to the grocery store and saw a friend who worked there. They talked for a moment and the friend went into the back room. He returned quickly with a bottle of maple syrup. Small things like real maple syrup built warm friendships lasting many years.
The use of functional magnetic resonance imaging (MRI) has enabled researchers in two new studies to gain a better understanding of how the brain creates memories ... In one study focusing on visual memory, individuals given an MRI scan while viewing color pictures were later asked to identify which senses they recognized in a new series of pictures. The other study tested word recognition: after viewing a number of words while undergoing an MRI, subjects were asked to identify them by meaning or appearance. In both studies, the MRI scan revealed greater activity in certain regions of the brain as subjects viewed items that were later recognized.
These findings confirm that different kinds of memory are stored in different parts of the brain. Such knowledge can help explain memory formation, as well as provide insight into the processes that underlie memory disorders— which may allow scientists to identify where problems develop in the memory process and in turn devise treatments that bypass damaged areas.
- SCIENCE^ AUGUST 21, 1998, JOHNS HOPKINS WHITE PAPERS
Some days when I get out of bed, I feel I have more in common with my inscrutable cats, those noble animals who look into your
LOSING MY MIND
eyes and appear to know everything in your soul. Sabina is in my lap now as I write. I thought I would never say such a thing, but she is as fine a companion and nurse as I know. Now she watches me carefully all night, caring for me as I had cared for her.
Several years ago she was overmedicated by a young veterinar -ian when he cleaned her teeth. She returned to us near death. I watched her shivering, bewildered, and frightened, hiding from us. Watching this cat struggle was as teary an event as being diagnosed with Alzheimer's.
Sabina came back from dying, a feat so powerful I still search her for signs that she might have returned from a secret world with a message of healing for me.
There are days I never expected, days of sorrows, frustration, and bewilderment.
^-^
Friends often as
k me unanswerable questions after I tell them of the Alzheimer's diagnosis. "Are you certain of the diagnosis.'^" "It can't be true. You look so healthy; the doctors have made a mistake."
It does look and feel like Alzheimer's in its beginning stages, but it is not something I have had before; this is no simple memory loss that rest and recreation improves. Does it matter what is causing my memory to fail me.^ Probably not. If all the doctors are wrong, it won't make any difference. I am going to live as long as I can; that has always been my goal. I am also a realist and I have begun to adjust my life so each day has a structure to it, and a purpose: to enjoy every minute I can and to focus on the work I love with herb plants, and with words. I want to write the truest sentences I can in the hope my words give others the sense of struggle and joy I feel.
THOMAS DeBAGGIO
I have wasted precious weeks trying to put the right words together to tell a story of a man entangled in his own death. I have searched for the potent words that announce my coming departure, but I cannot find them.
After I was diagnosed with Alzheimer's disease, I began to feel eleemosynary tingles. This led me to think about becoming part of a trial group studying new Alzheimer's drugs prior to their release to the public. Maybe I have no chance of being saved by a miracle cure (the wait may be long) but loaning my diseased brain to science while it is still in my body to benefit others, including my son, might help.
I was proud of myself for having good intentions to aid humanity. I soon realized my participation in human drug trials assumed I was in the group taking the new medicine. I thought about the time I might lose to the disease if I was unlucky enough to be in the group given the placebo.
It was at this moment Rob Lively called. Rob, now a lobbyist on Capitol Hill, befriended me years ago in my garden where I sold herb and vegetable plants. Besides gardening, Rob loved bees and tried to talk me, and almost anyone who walked into the greenhouse, into raising them. His enthusiasms are legendary. He once bought a huge number of rosemary plants and had us deliver them to Capitol Hill in an attempt to win over the U.S. Congress for some arcane political point.
Losing My Mind Page 3
