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Marilyn and Me: Dealing With Illusions (or Life on a Parkinson's Drug)

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I was drinking coffee in the kitchen one night a few years ago when I heard, emanating from our stereo system two rooms away, the unmistakable voice of Marilyn Monroe singing "Happy Birthday, Mr. President."

Startled, I asked my wife, Gina, what that recording was doing on our stereo.

"You're hallucinating," she said. "That's the Grateful Dead. It's not even close to 'Happy Birthday,' much less Marilyn Monroe."

I think I have seen one Marilyn Monroe movie in its entirety, and I don't recall its title. Many years ago, I saw a film clip of her performance at Madison Square Garden in celebration of President John F. Kennedy's birthday.

Despite Gina's assurances, I continued to hear Marilyn singing until I walked into the next room and met the familiar sound of Jerry Garcia and the Grateful Dead. We concluded that I had somehow conflated the Dead's song "Uncle John's Band" with some faint music from the next-door neighbor's house and transformed the two streams of sound into something completely different.
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The dopamine agonist I had started taking a few months earlier for Parkinson's disease carried a warning that hallucinations were a possible side effect. It had already caused sleep attacks, so, I thought, why not hallucinations?

On the theory that once is an aberration — a curiosity, no matter how bizarre — I decided to wait before calling the doctor.

A few months later we were having dinner at a popular Indian restaurant in Vancouver, British Columbia, when I clearly heard a circus ringmaster barking up business through an amplified megaphone.

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No, Gina assured me, there was no ringmaster or other maestro with a bullhorn outside or inside. There was a man at the next table, speaking loudly, but not in the rich baritone I was hearing.

Fine, I said, but it was several minutes before I could disassemble the voice I was hearing and trace it through the din in the room to the man next to us and some tabla music playing in a bar in an alcove at the back of the restaurant.

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If once is an oddity, I thought, twice is the beginning of a pattern. But what exactly does that mean?

Virtually all the drugs used to increase dopamine levels in people with Parkinson's can apparently bring on hallucinations, severe enough in some cases to require discontinuation or treatment with antipsychotic drugs. Each choice has complications.

The alternatives to a drug reaction were not pleasant to contemplate — chief among them schizophrenia, Lewy body dementias and a particularly aggressive form of Parkinson's disease.

My "auditory hallucinations," as I called them for lack of a better name, were, if incongruous, intermittent and benign enough that I decided to wait until my next regular visit to the neurologist, unless they intensified.

I was granted a temporary reprieve from my dithering by Dr. Alvin C. Burstein, a psychiatrist in Scottsdale, Ariz. A friend of nearly 40 years, he explained that technically they were "illusions," because they were shaped from external stimuli.

"Hallucinations," on the other hand, are generated within a person's mind, independent of what's going on around him, he said.

My neurologist later agreed: I was experiencing "auditory illusions," and as long as they didn't rise to the level of hallucination or increase in frequency or become associated with mental impairment, the only thing to do was to keep an eye on them.

That said, the mystery of my "auditory illusions" remains unsolved. By most commonly accepted estimates, 25 to 30 percent of Parkinson's sufferers have "hallucinations," usually linked with the long-term course of Parkinson's, daytime somnolence, severe cognitive disorder or dopaminergic drugs.

A vast majority of hallucinations are visual. Of the 10 to 12 percent of patients who have auditory hallucinations, only about 2 percent hear sound alone. Tactile and taste hallucinations are more rare but not unknown.

In a widely cited paper in the April 2000 issue of the journal Brain, a group of neurologists, led by Dr. Gilles Fénelon of the Léopold Bellan Hospital in Paris, suggested that about 40 percent of Parkinson's patients suffered hallucinations.

Fully a quarter of them experienced minor forms of hallucination, which Dr. Fénelon and his colleagues defined as the sensation of presence, commonly of a person; sideways passage, usually of an animal; and illusion, in which one thing is transformed into another.

These minor forms have been little studied, the researchers wrote, in part because people who experience them don't report them, for fear of being called psychotic or because they have accepted them as more or less normal.
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The French neurologists also argued that minor hallucinations might be caused by Parkinson's disease itself, not the medication used to treat it. They cited various theories that Parkinson's interferes with the perceptual representation system, especially the ability to screen out irrelevant stimuli.

But no one is certain, just as no one is certain what minor hallucinations might presage for the development of Parkinson's. For now, we watch and enjoy a few laughs, knowing they could turn bitter.

A few nights ago, at a dinner with friends marking my 56th birthday, I heard a horse neighing. Gina observed that it was a woman with a loud laugh and then told the story of Marilyn Monroe and me.





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