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^A Case of Amyotrophic Lateral Sclerosis* David Barnard Maurice Baker * * lives with his wife, Paula, on die first floor of a comfortable two-family house on the outskirts of a large Eastern city. Mr. Baker, who is seventy-seven years old, and his wife, who is seventy-diree, are part-owners of the house. They have been married for fifty-two years. The Bakers were bom and married in England, arriving in the United States in 1948. Their son lives in the Midwest, and visits his parents every two or three months. Mr. Baker worked as an insurance agent until his illness forced him to stop at the end of 1979. Mr. Baker's illness is amyotrophic lateral sclerosis (ALS). This is an incurable, degenerative motor neuron disease, which progressively destroys the muscles in the extremities and trunk. It is marked by increasing weakness and paralysis, although sensory nerves are not affected. Though its progress can be erratic, with periods of rapid deterioration of strength and function interspersed with periods of stability, functions that are lost cannot be restored. Mr. Baker consulted his physician in April 1978, complaining that he was getting unusually tired in his legs, and was having difficulty dancing — * This case history is drawn from a larger study of religious and psychological dimensions of primary medical care, written in 1979-80. The goal of this research was to depict illness as a shared experience in the lives of sufferer and healer, and to trace the evolution of perspectives among the principal participants. As a participant-observer, 1 personally witnessed the physician-patient encounters described below, which comprise approximately three-fourths of the encounters between physician and patient during the tenmonth study period. In addition, I conducted separate tape-recorded interviews of doctor and patient at four-to-six-week intervals from August 1979 to February 1980. Extended quotations in the text are verbatim transcripts from approximately eight to ten hours of taped conversation. Accounts of actions and dialogue during doctor-patient visits are based on notes made immediately following each visit, occasionally checked with the physician for accuracy. The medical record was reviewed, with the patient's permission, to obtain pertinent background information. I am indebted to both the physician and her patient for their willing cooperation in this research. My work was supported in part by a grant from the Maurice Falk Medical Fund. "All names in this case have been changed. Literature and Medicine 5 (1986) 27-42 C 1986 by The Johns Hopkins University Press 28 ACASEOFALS an entertainment he and his wife had enjoyed for many years. He had also fallen occasionally — always attributing it to ice on the sidewalk or some odier accident —and his wife had noticed diat he was "walking sort of strange." For the next four mondis, Mr. Baker underwent a series of diagnostic tests, including a period of five days' hospitalization in June. At this time he was too tired and weak to walk around the block without resting four times. This period was filled widi uncertainty. Mr. Baker tried to sympathize with doctors who "wanted to be sure before they spoke to me, and in die meantime I wondered what the hell was happening." His uncertainty was exacerbated by die behavior of some of the consultants: There was a specialist who came to see me, and he said nothing. He just told me to get out of bed and walk — which I did - he had a couple of doctors with him, I think, and he said, "O.K., you can go back to bed," and I never saw him anymore. Aldiough die diagnostic tests were consistent with ALS, diere was lingering uncertainty even among the physicians. Mr. Baker's medical record contains a note, in August 1978, "patient and wife educated about the disease," but for the next five mondis there were more tests and more consultations. Meanwhile, the Bakers slowly absorbed die implications of their situation. Mrs. Baker, recalling the time immediately following their physician's description of ALS, said. We didn't want to discuss it. We said, "Let's make the best of whatever it is, and keep calm. Give him every possible care...


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