My own experience with parkinsonism as a young doctor was predominantly with the patients I described in Awakenings, who did not have ordinary Parkinson’s disease but a much more complex syndrome. They were survivors of the encephalitis lethargica epidemic that followed the First World War, and they had come down, sometimes decades later, with postencephalitic syndromes including not only a very severe form of parkinsonism but often a host of other disorders, especially sleep and arousal disorders. These postencephalitic patients were far more sensitive to the effects of L-dopa than patients with ordinary Parkinson’s disease. Many of them, once they were started on L-dopa, began to have excessively vivid dreams or nightmares; often this would be the first apparent effect of the medication. Several of them became prone to visual illusions or hallucinations, too.

When Leonard L. was started on L-dopa, he began to see faces on the blank screen of his television set, and a picture of an old western town that hung in his room would come to life as he looked at it, with people emerging from its saloons and cowboys galloping through the streets.

Martha N., another postencephalitic patient, would “sew” with hallucinatory needles and thread. “See what a lovely coverlet I have stitched for you today!” she said on one occasion. “See the pretty dragons, the unicorn in his paddock.” She traced their invisible outlines in the air. “Here, take it,” she said, and placed the ghostly thing in my hands.

With Gertie C., the hallucinations (precipitated by the addition of amantadine to her L-dopa) were less benign. Within three hours of receiving the first dose, she became intensely excited and deliriously hallucinated. She would cry out, “Cars bearing down on me, they’re crowding me!” She also saw faces “like masks popping in and out.” Occasionally she would smile rapturously and exclaim, “Look what a beautiful tree, so beautiful,” and tears of pleasure would fill her eyes.

In contrast to these postencephalitic patients, people with ordinary Parkinson’s disease do not usually experience visual hallucinations until they have been on medication for many months or years. By the 1970s, I had several such patients who had started to get hallucinations, which were predominantly (though not exclusively) visual. Sometimes these began as webs and filigrees or other geometrical patterns; other patients experienced complex hallucinations, usually of animals and people, from the start. Such visions might seem quite real (one patient had a nasty fall while chasing a hallucinatory mouse), but the patients soon learned to distinguish them from reality and ignore them. At the time I could find almost nothing in the medical literature about such hallucinations, although it was sometimes said that L-dopa might make patients “psychotic.” But by 1975, more than a quarter of my patients with ordinary Parkinson’s disease, while otherwise doing well on L-dopa and dopamine agonists, had found themselves living with hallucinations.

Ed W., a designer, started to get visual hallucinations after he had been on L-dopa and dopamine agonists for several years. He realized that they were hallucinations and regarded them largely with curiosity and amusement; nevertheless, one of his physicians declared him “psychotic”—an upsetting misdiagnosis.

He often feels himself “on the verge” of hallucination, and he may be pushed over the threshold at night, or if he is tired or bored. When we had lunch one day, he was having all sorts of what he calls “illusions.” My blue pullover, draped over a chair, became a fierce chimerical animal with an elephant-like head, long blue teeth, and a hint of wings. A bowl of noodles on the table became “a human brain” (though this did not affect his appetite for them). He saw “letters, like teletype” on my lips; they formed “words”—words he could not read. They did not coincide with the words I was speaking. He says that such illusions are “made up” on the spot, instantaneously and without conscious volition. He cannot control or stop them, short of closing his eyes. They are sometimes friendly, sometimes frightening. For the most part, he ignores them.

Sometimes he moves from “illusions” to frank hallucinations. One such was a hallucination of his cat, which had gone to the vet for a few days. Ed continued to “see” her at home, several times a day, emerging from the shadows at one end of the room. She would walk across the room, paying no attention to him, and then disappear into the shadows again. Ed realized at once that this was a hallucination, and had no desire to interact with it (though it aroused his curiosity and interest). When the real cat came back, the phantom cat disappeared.26

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