A 47-year-old manager for the New York City government, Richard underwent emergency brain surgery and spent three weeks in a coma, followed by nearly two months in the hospital. He suffered a severe traumatic brain injury that left him with permanent cognitive and speech problems and robbed him of his sense of smell and taste.
“They were preparing me for a lifetime of therapies,” recalled Rose of the weeks her husband spent at Kessler Institute for Rehabilitation in East Orange, N.J.
But no one prepared the Andersons for Richard’s unpredictable and uncontrollable weeping, which began weeks after the accident and seemed to worsen with time.
“He would cry with almost anyone,” his wife recalled. Thoughts of his dogs, his family or even happy occasions could trigger tears. His teenage daughters found the incidents, which occurred several times a week, almost unbearable.
“As things got better, this shined brighter,” said Richard Anderson, who describes himself as a “very chauvinistic kind of guy” who was mortified by his inability to control his emotions. “It was very upsetting to me to have tears just rolling down my face.”
Over time his longtime neurologist began to suspect that the crying was not a manifestation of sadness, grief or depression, but had a different cause.
‘Behavior I’d never seen’
Doctors first told Rose Anderson that her husband would not survive. Somehow he did, but the new Richard bore little resemblance to the man she had known for 27 years. Previously calm and stoic, he was initially combative and agitated, did not recognize his family and spoke only gibberish.
At Kessler, he regained his memory — although he still remembers nothing about the accident — and his speech improved.
“We could see what the new Richard was going to be,” his wife recalled. Outwardly he showed few signs of his injury, although his eyes seemed devoid of their previous expressiveness. The accident left him with aphasia, difficulty expressing ideas and communicating verbally, and subject to profane, angry outbursts. Returning to his job was out of the question.
For his wife, the loss of their previously easy intimacy was especially difficult. “He read me, I read him — that was gone,” she recalled.
Several months after the accident, when Richard was back at the family’s Staten Island home, Rose got a call from him while she was at work. He was sobbing uncontrollably, behavior she had never witnessed. “I thought he was just overwhelmed,” she recalled. “It just killed me because there was nothing I could do. This was behavior I’d never seen. Richard has always been so strong.” At the same time, she understood why he might be crying. In his situation, who wouldn’t?
Her feelings of helplessness were magnified by the enormity of the challenges her family faced. “Out of everything you’re dealing with, trying to keep everyone together, crying is the last thing you need,” she said. One daughter was struggling with post-traumatic stress disorder triggered by the accident. The other confided to her mother that “I just want to run away when I see Dad” crying.
Friends who witnessed the tears tried to make the Andersons feel better by assuring them that they didn’t matter. But Richard found his crying deeply embarrassing and withdrew from social situations.
One of the most poignant episodes occurred at a father-daughter high school dance when he suddenly burst into tears. He hurried out of the gym, hoping his daughter hadn’t seen anything, and called his wife from the car.
Jonathan Fellus, a neurologist who is the former director of brain injury rehabilitation at Kessler, began treating Richard Anderson a month after the accident. Over the years, he and other doctors prescribed various antidepressants and anti-seizure drugs to try to quell the crying and angry outbursts.
“Of course he’s depressed,” said Fellus, now director of rehabilitation at Meadowlands Hospital Medical Center in Secaucus, N.J. “But there came a point when he should have been better” — and he wasn’t. “Any little thing would seem to set him off.”
Increasingly, Fellus said, he became convinced that Anderson’s crying was not a result of sadness or depression. He suspected a little-understood, often overlooked disorder called pseudobulbar affect (PBA) that can accompany a severe brain injury. PBA, which is characterized by involuntary and inappropriate crying or laughing episodes, is also seen in stroke patients as well as in those with multiple sclerosis, amyotrophic lateral sclerosis (also known as Lou Gehrig’s disease) and Alzheimer’s disease.
PBA, previously known as emotional incontinence, pathological laughing and crying, and involuntary emotional expression disorder, is not new. It was first described by Charles Darwin in his groundbreaking 1872 text, “The Expression of the Emotions in Man and Animals.” Little is known about its precise cause, according to the Multiple Sclerosis Foundation.
Some researchers believe that it results from impaired chemical signaling in the brain, which disrupts the pathways that control the expression of emotion. It is estimated that about 1 million Americans show signs of the disorder.
Different from depression
Distinguishing depression from PBA can be difficult because they can coexist. But unlike depression, episodes of PBA occur suddenly and may bear little relationship to the patient’s underlying emotional state. Some people with PBA cry when they are happy; others laugh when angry.
Until recently, treatment largely consisted of antidepressants. In 2010, the Food and Drug Administration approved the first drug to treat PBA, Nuedexta, which was found to diminish episodes in patients with Lou Gehrig’s disease and MS.
Nuedexta consists of a combination of two generic medicines: dextromethorphan, a common cough supressant, and quinidine, which is used to treat an irregular heartbeat. Dextromethorphan is believed to bind to brain receptors, reducing the laughing and crying, while quinidine slows the breakdown of dextromethorphan. An earlier version of the drug was rejected in 2006 because of concern about heart problems.
Fellus said he mentioned PBA to the Andersons in 2009 and told them he thought Richard might benefit from the new drug. “I think he was the first patient I put on [it],” Fellus said. (Since then, the neurologist said, he has received about $25,000 in speaking fees from Avanir, the drug’s manufacturer.)
The results have been dramatic, the Andersons say. Within a month of starting the drug in early 2011 — seven years after he was injured — Richard’s crying episodes diminished from several times a week to twice a month.
Richard said that he now feels more in control of his emotions. “I can put a cap on it,” he said. He no longer takes antidepressants, has a volunteer job working with other brain-injury patients and has expanded his social horizons.
Rose said the drug has helped her, too. “It feels so good to regain that part of my relationship where I can lean on him a little bit,” she said. “It has definitely helped [us] regain some quality of life — and that’s a lot.”
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