Illness in the movie has little in common with typical Parkinson's

A DIFFERENT 'AWAKENING'

January 29, 1991|By Gerri Kobren

For many viewers, the movie "Awakenings" is a powerfu message about the indomitability of the human spirit, even when locked up in a body immobilized by Parkinson's disease.

For people who actually have Parkinson's disease, the movie speaks more personally. "I tended to be a little depressed by it," says EdBlazek, 72. Diagnosed with Parkinson's disease eight years ago, Mr. Blazek, of White Marsh, is president of the Parkinsonian Society of Greater Baltimore.

Although the movie takes some dramatic liberties, it presents an awful historic reality: In the wake of the great influenza epidemic of 1918, a kind of sleeping sickness -- known scientifically as encephalitis lethargica -- swept through the world.

Aftereffects of the virus left some victims like statues, suffering from what was known as post-encephalitic Parkinson's disease. The movie shows them speechless, unblinking, still. Life passed them by as they languished for decades in a warehouse-like institution.

"The movie did an excellent job of putting it all together," says Mr. Blazek. However, he adds, "It was a different kind of disease."

In fact, the post-encephalitic Parkinsonism seen in the movie and described in the book "Awakenings" was unusual on many counts. The encephalitis that caused it seems to have disappeared, and reports of people with post-encephalitic Parkinsonism are "incredibly rare," according to Dr. Stephen Reich, assistant professor of neurology at the Johns Hopkins Medical Institutions.

And while Dr. Oliver Sacks, neurologist-author of the book "Awakenings," is pleased with the film, he is also "concerned that people understand that the Parkinson's symptoms portrayed in the movie are much more severe than ordinary Parkinson's," says Kate Edgar, an editor who works with him.

There are, however, points of similarity: Parkinsonian immobility occurs because the part of the brain that produces a chemical called dopamine is destroyed. Dopamine transmits the nerve cells' instructions for movement, balance and muscle tone.

The reason for the cell destruction in regular Parkinson's disease is unknown, though viral infection has been ruled out, according to Dr. Paul Fishman, assistant professor of medicine at the University of Maryland Medical Center.

As dopamine production shuts down, usually over a period of years, the brain gradually loses its ability to make the body move; muscles are left without instruction.

"There's rigidity of muscles, a 'cogwheel' rigidity [causing] a ratchety quality as you move the limbs," Dr. Reich said. "There's slow movement, called 'brady-kinesia,' and shuffling gait. Patients have trouble with balance. Their posture tends to be bent. They have diminished facial expression."

"Some of these patients speak very softly and slowly. They are not usually mute, but they have trouble in articulating, and you have to take a lot of time and effort to understand them," Dr. Fishman said.

Until the discovery of a product that could replace dopamine, nothing could be done for Parkinson's patients. In the 1960s, that drug was found: L-dopa (also called levodopa).

But in the early days of therapy, when "Awakenings" occurred, the appropriate doses had not been worked out, and the side-effects were not always predictable or controllable. In the movie, the drug restored normal activity briefly, and then took the patients past mobility and into a state of tics, twitches and dysfunctional hyper-movement.

"The amount [of L-dopa] was enormous by current standards," Dr. Fishman said. "The doses were 10 to 100 times as much as we would give a Parkinson's patient today. Even though levodopa has action mostly at the [dopamine-producing area], it has action at other places as well, so there are problems at other locations, like psychosis and confusion. Excessive levodopa can make a Parkinson's patient hallucinate.

That's especially true when the Parkinson's patient has other kinds of brain damage, as occurred in many of the post-encephalitics. In ordinary Parkinson's, that's not usually what happens; the disease is incurable, but dopamine-replacement, along with an arsenal of newer drugs, reduces severity of symptoms.

"For the average patient," Dr. Reich said, "Parkinson's ends up being a nuisance more than anything else. It does not take years off life. The disease is progressive and can be disabling, but the average patient can be treated effectively and can maintain independence. No doubt it is troubling, but the majority of patients are not in nursing homes. The majority are taking care of themselves."

Mr. Blazek is part of that majority. His illness started with a slight tremor in his right hand, and a slowing down of his walking speed. He's taking several drugs, including one that combines L-dopa with a product that reduces side effects, and his symptoms have not become disabling.

"I have tremor in my legs once in a while, tremor in both hands. And I do stammer from time to time," he said.

But he's still driving his car, still helping organize Parkinson's support groups, still putting out newsletters for Parkinson's patients here and nationwide.

"I'm still doing just about everything," he said.

For more

*Call:

The American Parkinson's Disease Information and Referral Center at Johns Hopkins Hospital, at 955-8795.

*Or read:

"Awakenings," by Oliver Sacks (Harper Perennial paperback, 1990).

"The Parkinson's Handbook," by Dwight C. McGoon (W. W. Norton, 1990).

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