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"Brain Sounds"
© Mona Schwartz 2004
 “Brain Sounds” is the first person account of Mona Schwartz’s experiences as a Parkinson’s patient and, subsequently, with DBS-STN. While actively seeking a publisher of her memoir, Mona graciously agreed to allow us to publish excerpts. If you would like to see Mona find a publisher, please write us with your support. We will forward all letters to her.
Chapter One
I wish I could say I awoke and then I moved. It would make a much more dramatic beginning. But, I waited two more weeks; then I moved. And the moment had all the drama I could have wished for.
After years of limited mobility, extremely negative reactions to medicine, and a prognosis for a bleak future, I finally had hope. . . and real movement. I was one of approximately one and a half million people in the United States, millions worldwide, who suffered with Parkinson’s, a degenerative disease that affects mobility. The stage I was at, after almost twenty years of slow degeneration, suggested that I no longer should live alone. If I bent over, I couldn’t straighten up. If I lay down, I struggled to get up. If I sat down, it had to be on the edge of a firm chair. And God forbid I fell down, which happened at least once a week. Depending on the prevailing whim of the Parkinson’s, either I was able to crawl to something I could pull myself up on, or I could lie there until somebody rescued me. And I lived alone.
The symptoms of Parkinson’s are generally described as tremor, rigid posture, slow movement, and a shuffling walk. That description is accurate as far as it goes; however, it doesn’t begin to describe the jail one’s body becomes.
Today, every moment of every day is a gift. I waken in a position different from the one I went to sleep in. I stretch luxuriously, and I “pop” out of bed. I walk to the kitchen, make breakfast—including boiling water, which involves filling the kettle, then pouring the hot water in, not past, the cup which I have pre- filled with instant oatmeal. I take pleasure in brushing my teeth, and I’m dressed in five minutes.
I no longer have to allocate an hour for getting on my clothes and dealing with the various fasteners. Pulling up zippers on slacks and fastening buckles or tying laces on shoes was problematic. Heels, even low ones, and pumps were out of the question. I had long ago abandoned skirts because trying to pull up pantyhose was a frustration. And manipulating a button into its hole was an Olympic event. Consequently I settled for baggy jeans with an elastic waist, a loose top worn over them, and jogging shoes that I had allowed an extra half-hour to lace—not exactly the fashion statement I was used to, but pragmatic and realistic. What was my life like before Parkinson’s? Pretty much like anyone else’s. I went to work, which meant teaching basic writing skills to college freshmen who didn’t want to be in that particular class at that particular time in their lives. And who could blame them? But I digress.
I had many interests, primarily reading and crafts. I was an omnivorous reader, a Ph.D. in English literature. Commuting was primarily an opportunity to read, having only peripherally anything to do with getting from point A to point B.; reading was my justification for taking public transportation. It may be a cliché, but an absence of interesting material on hand would drive me to reading cereal boxes. They have an amazing wealth of nutritional information.
I dabbled in various crafts, especially needlework, including sewing, needlepoint, and embroidery. For a time all I wore were designer-inspired clothes I had made myself. I knitted and crocheted a number of sweaters. I made needlepoint sofa pillows.
Additionally, I had become involved in faux finishing, working primarily on small boxes, and the newest addition to my repertoire was decorative printing with rubber stamps on fabric and other surfaces. I had even considered a second career working in the crafts market after retirement. My problem was deciding which craft I enjoyed the most.
My most truly artistic endeavor was photography—the serious kind, not the vacation or family snapshots we usually mean when we talk about amateur photography. I specialized in still lives, flower and nature close-ups as well as carefully selected segments of landscapes, the best of which I had enlarged, framed, and hung in the twenty foot long hallway in my apartment, a gallery of my favorite places and images.
Also there was cooking. I loved to cook; I even had considered writing a vegetarian cookbook which didn’t rely heavily on eggs or soy-tofu as protein sources, as did the few vegetarian cookbooks published at the time.
I never watched television unless I was working on some craft simultaneously. I considered just sitting, with hands unoccupied, if not exactly the devil’s workshop, a waste of precious time. Finally, there was the athlete deep within me. And I mean deep. After almost thirty-five years of being the klutzy one in any physical activity, I discovered tennis, and a left-handed tennis coach. I finally learned that it wasn’t me. It was all those past physical education instructors who said, “For the left-handed members in the group (with a significant nod in my direction), all you have to do is reverse the moves I spent the last hour, half-hour, fifteen minutes, whatever, instructing the group in, and you’ll get it.” I never got it, and considered myself doomed to the life of a non-athlete. That left-handed coach opened a new world of athletic possibility for me.
Throw in some socializing, an occasional film, theater, or museum, and discount shopping, which I took very seriously, so much so, that I was asked to give a seminar on “Discount Shopping in New York City” for freshman orientation. There you have the picture of a full, if not extraordinary life.
Then I got Parkinson’s. To say eventually it impacted on all aspects of my life would be to cheat the disease of its full significance. It stole my very identity.
The Parkinson’s first manifested itself with a slight left-hand tremor at age forty-one. I later learned I had “early onset” Parkinson’s. The tremor intensified, and the first sacrifices to Parkinson’s were tennis and photography. My new athletic self and my artistic self both died in infancy. Some would consider them frills, not necessary to a satisfying life. And I would agree, except they had become part of me, an integral part of my identity. And my essential self was slowly eroding along with my physical self.
I began grading papers, signing checks, writing notes, eating, with my right hand. Gradually my newly discovered right-handed dexterity also diminished. If I could pick up a pen—and that was iffy--I no longer could guide it reliably across a page.
Reading, my passion, became another lost pursuit. Turning pages, holding up a book, even one in the small paperback format, and holding it still, were impossible. Talking books don’t offer the same gratification as reading. They are all about content, sans the entire “book” experience. Savoring the very essence of “book” had been a part of the pleasure I took in reading.
The list of accommodations grew. In the end, Parkinson’s prevailed. All of my remaining interests required some degree of manual dexterity, so I couldn’t continue teaching, sewing, knitting, etc. After a while, having no alternative, I decided that it was acceptable to spend my days watching television, as long as it offered some intellectually redeeming content. Needless to say, I became Oprah’s most loyal fan, quoting her daily wisdom to whomever would listen to me. For the first time in my lifetime, I gorged on made-for-television movies. I discovered some of the cable stations offer movies around the clock.
Inevitably, I discovered the television shopping networks. I could buy almost everything I needed, except for groceries and pharmaceuticals, without leaving my apartment. Over the years, I bought such necessary and disparate products as a new vacuum cleaner, various environmentally-friendly cleaning products, clothes, and so on. I even replaced an antiquated computer. Television shopping was also a boon for gift purchasing, especially since I lacked the dexterity required for on-line and catalogue shopping. All I needed to do to connect to the well informed order operators at QVC was to push the speed-dial button on my telephone.
Soon I became an unofficial shopping consultant for my friends. They would call me before making a major purchase, and I would expound on the features they should look for.
In addition, television shopping provided a welcome, unexpected contact with the outside world since it is all live programming, including spontaneous telephone calls from viewers who could say the most unpredictable things. My favorite caller was the female impersonator from Chicago, praising the on-stage beauty of QVC’s line of diamond look-alikes.
All it took was some judicious channel surfing, and I could fill my dance card for the day.
I ate mostly frozen microwaveable meals, which required only removal from the box for preparation; however, some of those boxes were frustratingly tightly sealed, and I had to attack them with a scissors—difficult, not to mention dangerous. I became an expert on the palatability of the various brands of frozen vegetarian meals. Of necessity, most tasted surprisingly good to me, a former almost gourmet cook. Thus followed the pattern of a typical day.
After a time, I felt I had become disembodied, a talking head, and not a very successful one at that, since my voice had lost much of its volume and resonance, another sacrifice to Parkinson’s.
My minimal contact with the “real” world included a wonderful, talented body worker, Rebecca, who came to my apartment once a week to manipulate my limbs in a constant battle against a variety of pains and to prevent atrophy. Today, she is in medical school, a good choice for her. (More about Rebecca later.)
I could still walk, with a shuffle, or stumble, granted, but it was, nonetheless, locomotion, and I reveled in it, a kind of grasping at straws, with an impaired grasping action.
A few words on the various anti-Parkinson’s medications: Soon after I was diagnosed, I learned that I was extremely sensitive to a variety of chemicals, especially those in the medications. They made me vomit, or produced uncontrollable leg movements, called dyskinesias, and put me to sleep. The dyskinesias, occurring at the beginning (“kick in”) and end of each dose (“kick out”), could be very intense and painful. I felt like I was being folded, against my will, into a gigantic origami figure. On the upside, I had a narrow window of nearly perfect movement after the medication “kicked in” before I fell asleep and before the medication “kicked out.”
Fortunately, the dyskinesias occurred only during “kick in” and “kick out” periods between which I had about two good hours on each dose. During this time I brushed my teeth, showered, paid bills, or cleaned a part of my apartment. In other words, I worked on whatever needed my attention most urgently. While I was “kicked in,” I held on to walls and furniture, in an attempt to avoid a fall, because another side effect of the medication was a feeling of being pushed forward, as if someone were behind me, pushing on my shoulders.
Consequently, when I was “kicked in” on my medication, I landed on my face not infrequently. But because I could anticipate the falls, I usually planned the landing to be face forward on a nearby couch or an upholstered chair, from which I then had to extricate myself.
At this point I need to clarify: Just because I live alone, doesn’t mean I am alone. I have a wonderful support network. A day after spending three nights on the bathroom floor, I signed a contract with a medical security company. The company supplied an emergency signaling button. The button activated a base unit that worked something like a speaker telephone, but it–and I—could be heard from any room in the apartment. I wore the button on a gold chain around my neck, like a pendant, day and night.
If I needed help, I pushed the button and a guardian angel spoke to me, ready to call someone from my list of contacts or even, if necessary, the police. I have friends and neighbors who selflessly kept in regular touch, volunteered to become contacts, who came and picked me up off the floor as late as 3 A.M. One neighbor, from time to time, even would spend the rest of the night with me, until she was certain I was back on my feet.
One friend, in particular, became my self-designated “chief caregiver” before whom all others cowered. She is the arbiter of my well-being. Aileen was a tennis buddy, and we shared many other interests, particularly those crafts-related. As the friendship grew, we began to travel together. That first summer we took a cruise of the Greek islands—the last major trip I was to take in almost twenty years.
We met in law school. I was on a sabbatical from teaching, and Aileen was working as a paralegal. At a “welcome freshmen” event the first week of classes, I was on the lookout for company for the subway ride home. Four of us discovered we could travel together, and Aileen was one of the four. We commuted as a group all that year I was in school.
I could give you a different reason for returning to school depending on the day of the week you asked. I think it was primarily about intellectual curiosity and accomplishing something new at the age of forty-one. However, after the first year, I had to take a medical leave. Another loss to Parkinson’s.
After a while, Aileen and I coordinated our prime-time television viewing and dinner hours. From our respective homes we would telephone each other when dinner was ready, consult on the evening show schedule, and turn on the television, prepared to make culinary judgments on our respective meals, also commenting on the plots, humor, casting, news stories, whatever.
It was like we lived in parallel universes: When we met, we were each recovering from relationships gone sour, and the deaths of our respective mothers, so we had a lot in common from the start. We each had spent years taking care of a semi-invalid, sight impaired mother, so the habit of ministering to someone else was a strong one. Eventually, Aileen perceived me as the current needy object of her ministrations. I must confess I was not as altruistic; my care-giving attentions were directed at my cat.
I had met Aileen about the time I noticed my first mild, left-handed tremors, which I self-diagnosed as a muscle pulled while playing tennis. She decided that if that were the case, I should be told so by a doctor. So, she sent me, under protest, to her mother’s neurologist.
Thus began an almost twenty-year friendship, and still counting. She is the sister I never had, but need.
And sister she was. Strangers constantly mistook us for siblings. It was not unusual for a waitress or salesclerk to ask, “Are you sisters? You seem to read each other’s minds; you must be related.”
However, I didn’t see a familial resemblance. In those days we both had brown hair and roundish faces, and there the resemblance ended.
Aileen is five feet six inches; I am a scant five feet four. Aileen is a full-sized adult; whereas, I am petite, almost frail in appearance.
In recent years, people have changed the question to, “Is she your mother?” while pointing at me. I am six years older, hardly of an age to be her mother. My hair is now silver-grey. My face, frozen for so long by the Parkinson’s, has taken on a stern look. I, who used to look ten years younger than my age, now look fifteen years older. I totally skipped my own age in the eyes of strangers.
I soon learned that I should have a friend attend doctor’s appointments with me as a backup listener and note taker. I couldn’t write fast enough. Besides, the diversion of taking notes would interrupt the bond I was trying to establish with the doctor. The cliché, “two heads are better than one” is true in this situation. Invariably I would focus on selected portions of the dialogue, and Aileen would focus on others. Also, we always had her notes to fall back on. Often, we could be found in the lobby of a medical building after a visit with a doctor, going over notes, filling in the blank spots.
I also learned to “shop” for doctors. I wouldn’t buy the first dress I tried on, so why would I accept the first doctor I spoke to? Living in New York City, I have access to some of the top neurologists in the country, the published ones, the researchers, the crème de la crème. I wanted a doctor not only with top credentials, but somebody I could talk to and who would listen to me. I wanted somebody respectful of me and responsive to my questions, not as one man, “tops in his field,” answered my question, “Why do you think I have Parkinson’s?” with “Trust me. I feel it in my gut.”
He was also the only movement disorders specialist who asked me to remove my blouse so he could test my reflexes. A second doctor shouted into his intercom every five minutes, “Don’t disturb me; I have a Parkinson’s patient in here.”
There was another doctor, the uptown counterpart of “doctor tops in his field,” who, unfortunately, looked at his shoes when he talked, but I believed he was a compassionate man who fit my criteria. I sensed his absence of eye contact had developed as his unique form of emotional self-preservation, considering the number and condition of the patients he encountered in a single day. Besides, I wasn’t hiring him for his outstanding personality, nor was I screening him as a potential date; I was seeking his unique qualifications as a leading Parkinson’s researcher. Also, he fit my criteria of being a good listener and was responsive to me. After several years, when he retired, I asked his secretary whom she would choose as her neurologist, after her boss, and her first choice turned out to be a good one. Thus, I found, Dr. D.
When I first saw him, I thought he had just stepped out of an El Greco portrait, tall, lean, elongated and ethereal. He is soft-spoken, with gentle brown eyes and a pensive face in repose. When he is animated, however, he lights up, flashing unexpected boyish dimples.
He is a gentleman and a gentle man. He is a researcher with a comprehensive knowledge. He is a quiet and elegant scholar, an old-worldly young man.
I also learned that I had to do my homework. Thanks to Aileen, Internet access, and a printer, eventually I amassed a library of articles on Parkinson’s. These articles supplied me with at least enough information for some cursory pre-first appointment research, so the things the doctor was likely to say wouldn’t sound entirely unfamiliar. And, more important, more intensive post-appointment research would confirm or explain further what we thought the doctor had said. Also, I usually had an agenda for each appointment, a written list of the current questions that I needed answered.
Neurologists frequently request a daily medication report which records doses and reactions. They call it a “journal,” or “diary,” and it shows the current status, and progression, of the disease. When I lost the ability to write extended prose, Aileen devised two simple charts for me, of which she prepared multiple copies. I could fill in either chart myself, depending on the information Dr. D. was currently seeking. At every appointment, Dr. D. closely studied and responded to those charts.
Later, when I gained a neurological team, the entire team expressed approval of the charts. They, too, impressed me with their attention to the charts, which provided the information the doctors were seeking, from one appointment to another, in a simple visual format.
It was on a clear and sunny day, without a hint of drama, when I went to a routine appointment with Dr. D. I spent the time before I was called, standing in the waiting room. I stood, so I could walk into the examination room without the usual embarrassing, awkward, struggle preliminary to rising from a chair. As usual, the doctor looked at my charts with quiet attention. They showed a pattern of severe “kick-in” and “kick-out” dyskinesias on minimal doses of medicine. Most of my remaining medication time was spent fighting off sleep. Some judicious questioning and the standard examination revealed a serious balance problem; I was easy to tip over. I felt like a lump; I didn’t have the strength or the voice to complain. Dr. D. expressed his concern. He said that he had exhausted his bag of tricks.
He continued with the following compelling scenario: If I were to trip over my cat, not an unlikely occurrence given the propensity of cats to weave around one’s feet, I would surely fall, considering my balance issues. Then he added, such a fall could conceivably cause a broken bone, which could be more serious for me than for someone without my pre-existing mobility issues.
He suggested that I consider surgery. He said I was a good candidate. I demurred, thinking that he was referring to either a pallidotomy or thalamotomy, both brain surgeries for Parkinson’s, about which I hadn’t heard very encouraging reports. Years before, I had given the procedures some consideration, then rejected them for myself. As I understood these operations, they were similar, their major difference being the part of the brain they affected. They each involved the creation of a lesion, or lesions, accomplished by destroying cells in a selected region of the brain. The pallidotomy was primarily designed to alleviate beginning and end dose dyskinesias. The thalamotomy was designed to actually alleviate some symptoms of the Parkinson’s but had no effect on the dyskinesias. They were both reputed to be dangerous, irreversible, and most importantly to me, the effects were frequently short-lived, approximately three years, more or less. I didn’t consider the short duration of effectiveness worth the trauma of a risky brain surgery.
Dr. D. quickly assured me that he wasn’t talking about either a pallidotomy or a thalamotomy, but a procedure called deep brain stimulation of the subthalamic nucleus, DBS/STN for short. At the time, the procedure was not yet approved by the U.S. Food and Drug Administration, but was considered investigational, the last stage before approval. As part of the investigational study, it was being performed in twenty U.S. medical centers, including the one Dr. D. was affiliated with. Already approved was an alternate site for DBS surgery—the thalamus. But it was not considered as effective as the STN site. In addition, DBS/STN had been performed in France for the past ten or more years, with generally positive results. After hearing some details of the surgery, I felt it sounded too good to be true. The day called for the drama of a bolt of lightning, a clap of thunder, at least, but it was still a disappointingly ordinary clear and sunny day when we left the building.
Mona Schwartz is a former English professor, director of a college-level writing program, and author of a textbook on writing. A Parkinson’s patient for 20 years, Mona had DBS-STN surgery in November 2001. She lives with her geriatric cat, Cleo.
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