On the big screen . . .
“The Diving Bell and the Butterfly” (“Le Scaphandre et le papillon”), in French with English subtitles; directed by Julian Schnabel; U.S. limited release date Nov. 30; based on a true story.
The Premise: Jean-Dominique Bauby (Mathieu Amalric), an editor for Elle magazine, is driving along a country road in France when he begins to lose control of his car and then his body, speaking non sequiturs and becoming rapidly paralyzed. He awakes in a hospital near Normandy, having had a stroke. Now suffering from “locked-in syndrome,” he is only able to blink his left eye, with limited movements of his mouth and head (trapped as in a diving bell). Bauby reflects (his thoughts portrayed as narration): “Other than my eye, two things aren’t paralyzed -- my imagination and my memory.” With the help of a speech therapist, Henriette (Marie-Josee Croze), he learns to communicate by blinking his eye in response to the intended letters of the alphabet. Eventually he dictates an entire memoir about his life and his illness.
Meanwhile, physical therapists massage and manipulate his body, trying vainly to restore swallowing or sustained movement. His mouth is permanently turned to the left side; he can open it but is barely able to move his tongue. He moves his head once after his accident but not again. He is fed through a tube and breathes through another one inserted in his neck. Bauby ultimately develops pneumonia and dies a few days after his book is published.
The medical questions: What causes “locked-in syndrome” and how accurately is it portrayed? Can the condition be rehabilitated to any meaningful extent? Are patients at significant risk for medical complications? Can the damage of a stroke like this be reversed?
The reality: Locked-in syndrome refers to a condition in which a patient is motionless and mute but remains alert and aware of all sensation.
The film shows this condition fairly accurately -- the preservation of blinking is characteristic of this condition -- though the deficits are generally on both sides of the face. Variations are possible, but movements of the mouth or head would be rare and, frequently, blinking or vertical movements of the eyes are all people can do. Patients can generally breathe on their own but cannot swallow, so the movie’s depiction of Bauby -- receiving feedings by tube but not hooked to a respirator -- is also accurate.
Locked-in syndrome is generally caused by selective damage to an essential center at the base of the brain known as the pons. It is the underside (ventral aspect) of the pons that coordinates motor function, so damage to this area from a tiny clot, bleed or tumor can cause paralysis but not loss of awareness or sensation.
Early rehabilitation and the kind of comprehensive nursing care that the film depicts have been shown to reduce mortality to only 14% at five years, though according to Dr. Ib Odderson, medical director of the rehabilitation medicine department at the University of Washington in Seattle, after several weeks without improvement the neurological prognosis is “not good. Probably no changes after that.”
Dr. David S. Liebeskind, associate neurology director at the UCLA Stroke Center points out that the most common life-threatening complications are medical and include pneumonia, urinary and wound infections, occurring mostly because of immobility and flaccidity.
He says, “The medical complications are the most common sequelae once the neurological damage has stabilized.”
Stroke, which can occur at any age, is the No. 1 cause of long-term disability in the U.S. and the third-leading cause of death. Clot-dissolving drugs and catheter treatments can reverse some, if not all, of the damage if administered within the first few hours, but that may not have been possible 10 years ago in the French countryside. Even so, not all stroke sufferers are faced with the same devastating outcome as Bauby.
As Liebeskind says, “Time is critical in restoring blood flow to the brain. So the public should be familiar with stroke warning signs and symptoms. And once the damage is permanent, most strokes are not as devastating as Bauby’s type. There is often room to regain function.”
Dr. Marc Siegel is an internist and an associate professor of medicine at New York University’s School of Medicine. He can be reached at email@example.com.