Hallucinations (11 page)

E
d W. often describes a persistent feeling of a “presence”—something or someone he never actually sees—on his right. Professor R., while doing very well on L-dopa and other anti-parkinsonian drugs, also has “a companion” (as he calls it), just out of sight on his right. The sense of someone there is so strong that he sometimes wheels round to look, though there is never anyone to be seen. But his chief illusion is the transformation of print, words and sentences, into musical notation. The first time this happened was about two years ago. He was reading a book, turned away for a few seconds, and found, when he returned to the book, that the print had been replaced by music. This has occurred many times since, and may also be induced by staring at a page of print. Occasionally the dark border of his bath mat turns into staves and lines of music. There is always something—letters or lines—that is transformed into music; this may be why he regards these as “illusions,” not hallucinations.

Professor R. is a very good musician; he started to play the piano when he was five and still plays for many hours a day. He is curious about his illusions, and he has done his best to transcribe or play the illusory music. (His best chance of “catching” this phantom music, he has found, is to set up a newspaper on the music stand and play it as soon as the newsprint turns into music.) But the “music” is scarcely playable, because it is always very highly ornamented, with innumerable crescendo and decrescendo markings, while the melody line is three or more octaves above middle C, and so may have half a dozen or more ledger lines above the treble staff.

Seeing music has been described to me by others (see
this page
). Esther B., a composer and music teacher, wrote to me that, twelve years after being diagnosed with Parkinson’s, she started to have “a rather peculiar visual phenomenon.” She described this in detail:

Howard H., a psychotherapist, began to notice tactile hallucinations soon after being diagnosed with Parkinson’s, as he wrote:

I
s the use of L-dopa wholly responsible for such effects? Can L-dopa be regarded as a hallucinogenic drug? This seems unlikely in view of the fact that it is used in treating other conditions (such as dystonias) without provoking any hallucinations. Is there then something in the parkinsonian brain, or at least in some parkinsonian brains, which may predispose to visual hallucinations?
²

Too often, parkinsonism is seen as no more than a movement disorder, but it may also involve a number of other aspects, including sleep disturbances of various sorts. People with Parkinson’s may sleep poorly at night and often have chronic sleep deprivation. Their sleep may be marked by vivid and sometimes bizarre dreams, or nightmares in which they are awake but paralyzed, helpless to combat dream images being superimposed on their waking consciousness. All of these factors additionally predispose to hallucination.

I
n 1922 the French neurologist Jean Lhermitte described the sudden onset of visual hallucinations in an elderly patient—people in costume, children playing, animals around her (she would sometimes try to touch them). The patient had insomnia at night and drowsiness in the daytime, and her hallucinations tended to come at dusk.

Though this lady had dramatic visual hallucinations, she
had no visual impairments and no lesions in the visual cortex. But she had neurological signs suggesting an unusual pattern of damage in parts of the brain stem, the midbrain, and the pons. It was well known at this point that lesions in the visual pathway could cause hallucinations, but it was not clear how damage in the midbrain—not a visual area—could do so. Lhermitte thought such hallucinations might go with a derangement of the sleep-wake cycle, that they were essentially dreams or dream fragments invading daytime consciousness.

Five years later, the Belgian neurologist Ludo van Bogaert reported a somewhat similar case—his patient suddenly started seeing the heads of animals projected on the walls of his house at dusk. There were neurological signs similar to those of Lhermitte’s patient, and van Bogaert also surmised midbrain damage. When his patient died, a year later, an autopsy revealed a large midbrain infarction involving (among other structures) the cerebral peduncles (hence his coinage of the term “peduncular hallucinations”).

In Parkinson’s disease, postencephalitic parkinsonism, and Lewy body disease, there is damage to the brain stem and associated structures, as there is in peduncular hallucinosis—though the damage occurs gradually and not abruptly, as with a stroke. In all of these degenerative diseases, however, there may be hallucinations, as well as sleep, movement, and cognitive disorders. But the hallucinations are markedly different from those of CBS; they are nearly always complex rather than elementary, often multisensory, and more apt to lead to delusions, which CBS alone rarely does. The hallucinations of brain-stem origin seem to be associated with abnormalities in the acetylcholine transmitter system—abnormalities that may be aggravated by giving the patient L-dopa or similar drugs, which
heighten the dopamine load on an already fragile and stressed cholinergic system.

P
eople with ordinary Parkinson’s disease may be active and retain their intellectual powers for decades—Thomas Hobbes, the philosopher, for instance, developed “the shaking palsy” around the age of fifty, when he was completing his
Leviathan
, but remained intellectually intact and creative, though motorically disabled, into his nineties. But it has been increasingly recognized in the last few years that there is a more malignant form of parkinsonism, one accompanied sooner or later by dementia and by visual hallucinations even in the absence of L-dopa. Examination of the brain at autopsy in such patients may show abnormal aggregates of protein (so-called Lewy bodies) inside the nerve cells, mostly in the brain stem and basal ganglia but also in the visual association cortex. The Lewy bodies, it is conjectured, may predispose patients to visual hallucinations even before they are put on L-dopa.

Edna B. seems to have this disease, though the diagnosis of Lewy body disease cannot be made with certainty in life without doing a brain biopsy. Mrs. B. enjoyed excellent health until her mid-sixties, but in 2009 she developed some tremor in the hands, her first symptoms of parkinsonism. By the summer of 2010 her symptoms included some slowing of movement and speech as well as problems with memory and concentration—she would forget words and thoughts, lose the thread of what she was saying and thinking, and, most distressingly of all, she had hallucinations.

When I saw her in 2011, I asked her what her hallucinations
were like. “Horrible!” she said. “It’s like watching a horror movie, and you’re part of it.” She saw little people (“Chuckys”) running around her bed at night; they seemed to be talking to each other, she saw their gestures and their lips move, but she could not hear any speech. On one occasion she tried to speak to them. Although they looked frightening and (she thought) had evil intentions, they never molested or approached her, though once one of them sat on her bed. But far worse were certain scenes enacted before her. “I saw my son murdered right in front of my eyes,” she told me. (“It was Darkside stuff,” her husband interpolated.) Once, when her husband visited, she said, “What are you doing here? They just had your funeral at Sacred Heart Church.” She often saw rats, and sometimes felt them in her bed. She also felt “fish” nibbling at her feet. Sometimes she had hallucinations of being part of an army marching into battle.

When I asked if she had any pleasant hallucinations, she said that she had sometimes seen people “in Hawaiian dress” in the corridor or outside her window, getting ready to play music for her, though she never actually heard any music. What she did hear, however, were various noises—especially the sound of running water. No voices. (“Good thing I didn’t have those,” she said, “or they’d think I was really crazy.”) There have been some olfactory hallucinations, too: “people around me with different kinds of scents.”

When her hallucinations started, Mrs. B. was understandably terrified, and took them for reality—“I did not even
know
the word ‘hallucination,’ ” she said. Then she found herself more able to distinguish hallucinations from reality, but this did not prevent her from being frightened when they occurred. She always looked to her husband for reality testing; she would ask
him whether
he
saw, heard, felt, or smelled some of the things she did. Sometimes she would have distortions of vision—her husband’s face would be disfigured by a down-curving, sneering smile or occasionally his mouth would be upturned, “like a smiley face.” A particularly strange and frightening hallucination occurred recently. There is a poster of a Native American chief hanging above her bed, and this came to life for Mrs. B. the other day; the chief stepped out of the frame and seemed to be standing in the bedroom. To reassure her, her husband waved his hands in front of the picture to dissipate the hallucination—and the chief seemed to disintegrate, but then she felt
she
was disintegrating, too. On another occasion, clothes in the bedroom “started walking around,” and she had to have her husband shake a pair of jeans to show that it was just this, and nothing more.

Hallucinations may also occur in other types of dementia, including moderately advanced Alzheimer’s disease, though less often than they do in Lewy body disease. In such cases, hallucinations may give rise to delusions, or they may stem from delusions. There may also be, in Alzheimer’s or other types of dementia, delusions of duplication or misidentification. One patient of mine, sitting next to her husband on an airplane, suddenly saw him as “an imposter” who, she believed, had murdered her husband and was now trying to take his place. Another patient of mine, while she recognized the nursing home she was in by day, felt that she had been transferred to a cunning “duplicate” of the home each night. Sometimes psychoses can be centered on delusions of persecution, and occasionally these lead to violent behavior: one such patient assaulted a harmless neighbor, whom she felt was “spying” on her. Hallucinations in Alzheimer’s disease, like those of Lewy
body disease, are usually embedded in a complex matrix of sensory deceptions, confusion, disorientation, and delusions, and are rarely isolated, “pure” phenomena as in Charles Bonnet syndrome.

I
worked for many years with the eighty deeply parkinsonian postencephalitic patients I described in
Awakenings
. Many of them had been “frozen” for decades, virtually immobilized by their disease. Once I got to know them well (after they had been enabled to move and talk by L-dopa), I found that perhaps a third of them had experienced visual hallucinations for years
before
L-dopa was introduced—hallucinations of a predominantly benign and sociable sort. I was not sure why they hallucinated in this way, but I thought it might be related to their isolation and social deprivation, their longing for the world—an attempt to provide a virtual reality, a hallucinatory substitute for the real world which had been taken from them.

Gertie C. had had a half-controlled hallucinosis for decades before she started on L-dopa—bucolic hallucinations of lying in a sunlit meadow or floating in a creek near her childhood home. This changed when she was given L-dopa, and her hallucinations assumed a social and sometimes sexual character. When she told me about this, she added, anxiously, “You surely wouldn’t forbid a friendly hallucination to a frustrated old lady like me!” I replied that if her hallucinations had a pleasant and controllable character, they seemed rather a good idea under the circumstances. After this, the paranoid quality dropped away, and her hallucinatory encounters became purely amicable and amorous. She developed a humor and tact and control, never allowing herself a hallucination before eight
in the evening and keeping its duration to thirty or forty minutes at most. If her relatives stayed too late, she would explain firmly but pleasantly that she was expecting “a gentleman visitor from out of town” in a few minutes’ time, and she felt he might take it amiss if he was kept waiting outside. She now receives love, attention, and invisible presents from a hallucinatory gentleman who visits faithfully each evening.