When a person suddenly loses the ability to speak or to understand what others are saying, the hardships that cascade from that loss can be overwhelming - from the seemingly trite to the devastatingly depressing.
What hit Derrick Wong, 49, hardest was losing the ability to tell a joke. Ralph Soriano, 56, hates taking his car to the mechanic, knowing he will barely understand what's being said.
"Girls," said Luke Waterman, 30, with a sigh. Flirting used to come easy.
All three men - actually a pretty happy, hopeful gang for the most part - are longtime members of a group therapy program at the Aphasia Center of California, an Oakland nonprofit that offers treatment and ongoing education to people who have suffered communication disorders as a result of stroke or other brain injury.
The nonprofit specializes in long-term therapy, an area of aphasia treatment that has taken off in the past few years. For many decades, doctors and speech pathologists assumed that patients had a window of six months to a year to recover language skills lost to a brain injury.
Now, anecdotal reports and clinical research suggest that the window is much wider, and may even stay open a lifetime.
"There is evidence that people can improve and regain skills, even years after a stroke," said Blair Menn, a speech language pathologist at Kaiser Permanente Medical Center in Redwood City. "Everybody wants a quick cure, and brain recovery does not go quickly. People have to adjust their time frame. But the flip is that we've seen patients, one, two, three years outside of a stroke still make gains."
It's unclear, Menn added, whether patients who improve are truly repairing damage done to their brain or just getting better at compensating for language deficits. "But as far as I'm concerned, it's a success either way," he said.
Aphasia is a relatively common - about 1 million people in the United States have a form of it - but rarely talked-about disorder that affects at least a third of all victims of stroke. Other types of brain injuries can also cause aphasia, including traumatic blows to the head, tumors and even seizures and some forms of dementia.
The disorder can involve all kinds of communication, although it usually affects comprehension of spoken language or the ability to speak. It's broadly divided into two categories: fluent, in which people have a hard time understanding language but are able to speak, often nonsensically; and nonfluent, in which their comprehension is often fine but they have trouble forming words and expressing themselves.
Under those umbrella categories, there are innumerable variations to the complications people with aphasia experience. Some people struggle with reading or writing or, alternately, they may be just fine with written words but lose oral language skills. People may have trouble putting words into proper sentence structures, or they may constantly be searching for the right word and coming up a blank.
"It's like that feeling of having a word on the tip of your tongue, only all the time," said Dr. Kara Flavin, a neurologist who works with Stanford's stroke team. "They know what they want to say, and they know they used to be able to say it. People tell me it's frustrating. They say others will think they're stupid because they can't speak and understand things."
In fact, aphasia has nothing to do with cognition, Flavin said. Her patients are just as intelligent after their stroke or other brain injury as they were before.
Aphasia occurs because of damage in the left side of the brain, and the type of aphasia depends on precisely where in the left hemisphere the injury is focused. Aphasia is common in stroke because one of the main arteries leading to the left side of the brain also happens to be one of the easiest targets for blood clots and tears to the blood vessel.
In many cases, complete recovery from aphasia is possible and happens within a few days or weeks.
But with strokes, up to a third of patients who suffer aphasia end up with a chronic communication deficit. That's where long-term therapy comes into play.
Like most aphasia patients, stroke victims begin therapy soon after an injury, possibly within hours. Speech pathologists want to assess the nature and severity of the problem and determine whether patients can convey their basic needs, like whether they're in pain or need a bathroom.
Rehabilitation almost always involves one-on-one speech therapy, sometimes in intensive two-hour sessions most days of the week. Treatment depends on the type of aphasia, and may involve fairly new techniques. After the initial intensive therapy, patients often move on to programs to teach them new coping techniques, like how to go shopping or make a doctor's appointment.
"The goal is to get them to be able to communicate again. The most important thing is for people to be able to convey their needs and thoughts," said Susan Hennies, a speech language pathologist at Alta Bates Summit Medical Center in Berkeley.
What excites many speech and language specialists is the growing appreciation that many patients can see improvements long after their injury.
"There is complete hope," Hennies said. "If they've had a stroke or brain injury, these people with their flexible brains have the ability to communicate again. Maybe it will be in a different way. But people can make incredible gains. They can have very severe strokes and still come back."
That's news that Roberta Elman, founder of the Aphasia Center of California, would like to get out to the aphasia patients, many of whom fear that there's little hope of improvement once their communication skills seem to have reached a plateau.
"People used to think you could make changes to the brain for six months after the stroke, which is wrong. People make changes for years," she said.
Elman opened the Oakland aphasia center in 1996, after several years of research into using group therapy as treatment for chronic aphasia. The center serves about 70 patients a week, offering several group therapy sessions, plus other programs like a book club and "club aphasia" for members who want to play cards or dominoes.
The social activities - including the group therapy sessions - help patients hone their communication skills in a relaxed, natural environment, Elman said. Since they're with other people with the same condition, members may not feel as shy or anxious about their language deficits.
They also can exchange tips for coping with their condition - how to talk to a car mechanic, for example, or order dinner in a restaurant. For some people, just meeting others with aphasia can improve their outlook, Elman said.
Extreme isolation can be one of the worst side effects of aphasia, she said. Lacking strong communication skills, patients will lose ties to friends and family, avoid leaving the house and even lose touch with news or entertainment outlets that could keep them connected to the world at large.
"In an instant, it's like English isn't your native language. Your intellect is intact, but you're basically cut off," Elman said. "When people come to our groups, and they sit around a table with others and realize they're not alone, the impact is profound."
At a recent group therapy session at the aphasia center, the conversation started off slow and a bit stilted. But after 20 minutes or so the group was animated, members talking over one another even as they stumbled over missing words and scribbled quick pictures on notepads to get a point across.
Bill Wong, 61, didn't talk for three years after his stroke in 1999. Now, he exudes a quiet confidence and is clearly a leader at the aphasia center and among the men in the therapy group.
The first years after his stroke were tough, Wong said. He was scared and frustrated. He worried about his language skills further degrading, "like a muscle that atrophies from disuse."
But the words did come back, slowly. And "once you start, you just keep going," he said.