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Awakening to the Real Parkinson’s

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People who know me as a neurologist have asked, did those “Awakenings” really happen? Did people with Parkinson’s disease who had been inanimate for decades really spring from their wheelchairs and boogie after a swig of levodopa? And if the medication worked, why didn’t those miraculous effects last?

“Awakenings” is Hollywood’s cleansed-behind-the-ears and romanticized interpretation of case studies published in the early 1970s by Dr. Oliver Sacks, who sometimes writes nonfiction with a hand slanted by his imagination. But it faithfully captures the Angst and the promise of one of the many remarkable experiences of doctors and patients who experimented with a new drug.

Robin Williams plays Dr. Malcolm Sayer, a timid and quirky Sacks-like good fellow who notices a cluster of common characteristics among the patients warehoused at a chronic care hospital. Their bodies are so rigid that, when supine in bed, their heads must be forcibly pushed back to rest on a pillow. Elbows and wrists flex like joints dovetailed into odd postures. Mouths hang wide open, faces show no emotion and eyes take on a reptilian stare, seemingly fixed on nothing. A few of the stolid patients can still walk, but only with the bent, stiff shuffle described in 1817 by a London general practitioner, James Parkinson, who had included a tremor in the syndrome that took his name.

In keeping with big-screen decorum, none of Sayer’s patients who have reached the frozen end of Parkinson’s road appears incontinent or drools, suffers bed sores or is fed through a tube. Hollywood gives us another stretch of fantasy when we watch a parade of wheelchair-driven patients, each with an arm raised in a bizarre high five, grasping a caught ball. This dark and slapstick funny scene does dramatize the paradox that Parkinsonian woodenness may momentarily disappear when an urgent movement is required. We watch Sayer weave these signs into a diagnosis when he learns that each patient survived a bout of encephalitis lethargica, a viral epidemic around the years of World War I that was known to leave some survivors with Parkinson’s.

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In the summer of 1969, Sacks drew upon the remarkable progress of the previous 10 years of medical research into understanding the disease. Neuroscientists had defined the pathological changes in the brains of patients who died with Parkinson’s, discovered that several of the normal chemical messengers, especially dopamine, made by the nerve cells that gradually degenerate over its progressive course are in short supply, and then successfully restocked some of the missing dopamine in their patients with a drug called levodopa. Their achievement was no less a technical feat than another that summer; Americans had landed on the moon.

In “Awakenings,” levodopa also works for Sayer. Hollywood evaporates every feature of Parkinson’s in Sayer’s patients as soon as the correct dose of levodopa reaches their brains. It seems unlikely that people who had spent more than 20 years in bed and wheelchair could maintain the joint mobility, muscle strength and stamina to walk, without also receiving extensive physical therapy and conditioning exercises. And replacing dopamine does not usually cure all the symptoms and signs of the disease, in part because other chemical transmitters are missing that levodopa does not replace.

But in one of the scenes that puts a lump in your throat, Robert De Niro’s Leonard Lowe and comrades arise from the shadows of the night with strong voices and never a tremor or shuffling step. They show none of the intellectual decline that is so common in real-life cases of Parkinson’s within 20 years after the first symptoms, and only one of Sayer’s awakened patients feels depressed upon realizing that he has lost everything dear to him while incapacitated for decades. In the real world, more than a few severely disabled people committed suicide as soon as levodopa allowed them, at last, to gain a moment of control over their own lives.

Unfortunately, within a short time, their newly mobile faces grimace, their arms and legs fling and writhe exhaustively, and spasms impede speech and swallowing. De Niro acts this well. Even today, despite an armamentarium of newer drugs, many Parkinson’s patients after 5-15 years bear some of these daunting side effects when the nerve cells that receive the dopamine become supersensitive to it. At the end, “Awakenings’ ” patients are back in hibernation and too immobile to survive for long.

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Over time--more than a decade in today’s cases of Parkinson’s that are treated at an earlier stage than Sayer’s--the number of nerve cells that can take up levodopa and store it declines and the number of cells that can receive its electro-chemical message dwindles, so levodopa no longer works as well.

Post-encephalitic cases are now a rarity. Neurologists suspect that unnamed viruses, toxins and genetic errors act alone or with each other to produce Parkinson’s. In the 1990s, what Congress has proclaimed as “the decade of the brain,” basic science research is closing in on means of protection from and cures for this and other degenerative disease, including Alzheimer’s. When we get there, we’ll have a real Cinderella ending.


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