Donna didn't expect that things would be easy after her husband Richard suffered the double whammy of a blood infection and a stroke a year ago.
But it was a surprise that the emotional damage from the stroke was more disturbing than his physical disabilities.
He could no longer plan his days and didn't fully understand his limitations. What hurt her most, though, was that her feelings seemed to mean nothing to him.
"I think a 5-year-old probably had more empathy than he did," said Donna, 56, of Rosemont. "Even if I said, 'I'm so angry, so frustrated,' he would just look and say, 'Oh.' It was like beating a dead horse."
Her husband, who is now much better, didn't want his full name used because he may soon be job-hunting.
Doctors have long known that strokes and other kinds of brain damage can change emotional functioning. After all, the brain is as much in charge of whether we feel sadness, empathy, or apathy as it is of whether we can wiggle a toe.
But there is growing recognition that emotional dysfunction following stroke, which can disrupt crucial relationships and undermine rehabilitation, has gotten short shrift as rehab programs focused on the more obvious physical signs of brain injury.
"People are realizing now that there's a lot more to quality of life than people's strength and movement," said Carol Lippa, a Drexel University neurologist. "People want these [emotional] problems addressed."
MossRehab leaders thought there was enough demand for emotional help to open what they believe is the region's first outpatient clinic for people whose brain injuries are making emotions malfunction.
"The need is enormous," said Claire McGrath, a Moss neuropsychologist. "We have a wait list. It's a huge, huge issue for people after stroke."
Dealing with a disability is hard enough without adding brain injury to the mix, she said. "It's the brain that helps us cope with things."
A recent stumbling block arose when MossRehab needed to hire a psychologist who not only could do therapy but also understood brain damage, a fusion of skills that McGrath said is rare.
Paul J. Eslinger, a neuropsychologist at Pennsylvania State University, said interest in affective neuroscience grew as scientists realized that emotions were not just side effects of thinking but integral aspects of motivation, decision-making, and social interaction. "Emotions have a fundamental role in virtually all of our behavior on a daily basis," he said.
Emotional dysfunction after stroke is especially hard for families because it changes personality, the very essence of a loved one. "It really is a different person in some cases," Eslinger said. "It's really a heart-wrenching position to be in. They're there physically, but emotionally, they're not there in the way they were before."
Stroke rehabilitation workers need to discuss this with families, he said, because they often think the person "is doing it on purpose, that they don't care. It's just as physical in terms of its biology as not being able to find a word or use your hand."
After weeks of therapy at Bryn Mawr Rehabilitation Hospital, part of Main Line Health, Richard is now his old self.
Donna said he gradually got better at seeing her point of view. "He finally understood that our anguish started in March, way before he even understood what happened to him," she said. "He couldn't remember anything before August."
Scott Miller, a 63-year-old graphic designer from Haverford, had a stroke on the right side of his brain 10 years ago. Never depressed, he considers himself a "survivor, not a victim." He volunteers daily at Bryn Mawr Rehab.
People have told him he's different now, and he knows it's true. On the plus side, he thinks he's more patient and interested in helping others. But he hasn't been able to go back to work because he's disorganized. He's bad at math and his brain tires easily. He thinks he's more irritable and moody.
His wife, Veronica, has noticed more of an emotional disconnection than he has. "You just compensate and ignore what you can't change and just get on with things," she said.
Christine Crane suffered from anxiety after her stroke seven years ago at 32. The Moorestown, woman spent five weeks in Magee Rehabilitation Hospital.
"The first time I made a phone call, I was terrified," she said. She still cries too easily and laughs when she's frustrated, sometimes inappropriately. She blames the changes on brain damage and said they slowed her healing.
"When you're afraid to do something, you don't do it, and that's very detrimental to your recovery," she said.
Every stroke is different. Blockages or bleeding blood vessels cut off blood to parts of the brain. After some cells die, the remaining cells try to find new ways to communicate, but they don't always succeed.
Depression is probably the most widely recognized emotional problem after stroke. It can be caused by damage to brain cells and by the huge adjustments that follow a life-altering illness. Doctors said patients often respond to antidepressants, regardless of the cause.
One condition that Lippa is studying, pseudobulbar affect, is less common, but quite distressing for patients and families. Patients laugh or cry loudly when they're not feeling happy or sad. Or the outward sign of emotion may be far out of proportion to the feeling.
"It's a social problem more than anything," Lippa said. "They're embarrassed to go out in public and their caregivers are embarrassed to take them out in public because they're going to make a spectacle of themselves."
She's helping lead a clinical trial of the drug Nuedexta and is impressed so far with how patients with pseudobulbar affect are responding to it.
"I'm very confident with it," she said. "It helps people so obviously, so quickly. . . . We don't often see that with neurologic medications."
Argye Hillis is part of a team at Johns Hopkins University studying changes in empathy after stroke. Problems with emotional processing, she said, are more common in people who have suffered strokes in the right hemisphere. She is looking at subtle differences in skills. Some patients have normal feelings but are unable to convey them with tone of voice. Some can no longer sense anger or joy in the tone or cadence of others' speech, or read facial expressions. As Donna found, this can be devastating for families.
Depression is more common in left-hemisphere strokes, Hillis said. Patients with damage there may be very sensitive to other people's emotions.
Hillis said there are no good treatments yet for impaired empathy. That's one of the things she hopes to figure out.
Eslinger, who is also interested in empathy, said he taught one family to "speak their emotion." Instead of expecting their loved one to figure out what they were feeling, they were taught to put their feelings into words.
Lauren Massimo, a postdoctoral fellow at the University of Pennsylvania's Frontotemporal Degeneration Center, has been studying apathy in people with dementia-related frontal lobe damage. She said stroke damage likely would be similar. Apathy, she said, is the most disturbing symptom for families of people with frontotemporal dementia.
It is not just one thing but the result of a "disturbance of motivation" or poor initiation or poor planning. "It has important implications for treatment," she said.
Stimulants, for example, might help someone who has trouble getting going, but not someone who is disorganized.
H. Branch Coslett, a behavioral neurologist at Penn, said patients with right-sided strokes, which can cause emotional flatness or indifference, have more interpersonal problems. They are more likely to end up in a nursing home, or divorced.
"It's just too hard to be the only one that's trying, the only one that's caring," he said.
Eslinger said it can also be hard to cope with stroke patients who become impulsive and irritable.
Lippa agreed. "I think it's hardest when people really lose the appropriate response and they're kind of nasty to people that are making sacrifices to care for them," she said. Sadly, there's not much that can be done about it, other than to understand that it's no one's fault. "There aren't really good medications," she said, "for making someone grateful or appreciating someone."