|Maureen Larareo thought she was fine after she regained consciousness from a stroke in November 2005. “I didn’t know I couldn’t speak,” said the 58-year-old. “I thought I was saying things when I wasn’t.”The reason? Larareo had a condition known as aphasia. The acquired communication disorder can affect a person’s ability to speak and understand speech, and make it difficult to read and write. It can result from a stroke, traumatic brain injury, infection of the brain, and some types of dementia, including Alzheimer’s disease.
The condition was brought to the public’s attention when two well-known figures were diagnosed with it: Arizona Congresswoman Gabrielle Giffords, who was shot in the head in January 2011 by a gunman, and ABC World News reporter Bob Woodruff, who suffered a traumatic brain injury while reporting in Iraq.
Today, Larareo, Giffords, and Woodruff have all had remarkable recoveries. But experts say it takes time and work. “When I first started to talk, I could only say one word; it was devastating,” said Larareo, adding that she knew exactly what she wanted to voice but was unable to verbalize anything other than ’yes’ or ’no.’
After several months of therapy, she was able to speak in sentences again, and today she is fluent in most situations, although she rarely reads and has a difficult time telling a story.
“Speaking is more difficult than it used to be,” she said, noting that background noise makes it more challenging. “It took a lot of effort to learn to speak again.”
Aphasia affects about 1 million Americans and is more common than Parkinson’s disease, cerebral palsy, or muscular dystropy. “But in spite of its frequency, there is very little understanding of the condition on the part of the public,” said Jacquie Kurland, an assistant professor in the department of Communication Disorders at UMass Amherst, adding that about 150,000 new cases are diagnosed each year.
The majority result from strokes that affect the left hemisphere of the brain, which is the location of the speech and language centers. “People tell me they know what they want to say, but can’t think of the words,” said Laurie Korza, a speech language pathologist at Cooley Dickinson Hospital in Northampton. “It’s a complicated disorder.”
It’s also one that causes an enormous amount of frustration. “It does not impact intelligence — the person’s thoughts and ideas are intact, but their ability to access language to express themselves is affected,” said Kellie McCue, a speech therapist at Weldon Rehabilitation Hospital in Springfield.
Korza said a patient told her recently that the person behind the counter at a local drugstore lost patience as she struggled to express what she wanted. “She felt very badly about herself as a result. But people don’t understand how to deal with someone who doesn’t communicate clearly.”
And yet, it’s something that almost everyone has experienced, although to a much lesser degree. “Most people have had occasions where they have a word on the tip of their tongue but can’t recall the exact word they want to use,” Kurland said. “Having aphasia is like that on steroids. It multiplies the problem because certain areas of the brain are affected.”
The condition can range from mild — which causes a person to have occasional trouble with word retrieval — to extremely severe, where the person cannot speak at all.
Aphasia can occur suddenly or come on slowly with dementia, said the experts we spoke with.
“A gradual evolution in the ability to process language is part of Alzheimer’s disease,” said Dr. Carmel Armon, chief of Neurology at Baystate Medical Center and professor of Neurology at Tufts University. “Naming things becomes very difficult, so people may have substitution errors; they may say ’bubble’ instead of ’bottle.’ And it can be very frustrating because, in many cases, they are aware they are not getting out the word they want to say.”
Korza concurs, and notes that patients with aphasia often tell her they know what they want to say, but cannot think of the words. “Sometimes families tell us that the person doesn’t make sense. They might mean to say ’water’ but use a nonsensical word like ’flurk.’ It can be very frustrating,” she said, explaining that she advises stroke victims to carry small cards they can present to others that say,”I have trouble speaking as I am recovering from a stroke.”
Aphasia is divided into categories. The term ’expressive aphasia’ is used to describe people who have trouble using words and sentences. “They may have significant difficultly with word retrieval,” McCue said. “And their written expression is also typically affected.”
Receptive aphasia occurs when people are fluent but have a difficult time understanding what people are saying to them, while global aphasia is the term used to describe people who struggle with words and understanding.
Armon describes it as difficulty encoding and decoding. Encoding is the process by which information from a source is converted into symbols so it can be communicated, while decoding is the ability to apply knowledge of letter-sound relationships to pronounce written words.
He gave an example of what it feels like to lose the ability to translate sounds into meaning.
“If you say the word ’giraffe,’ most people get a picture in their heads of an animal with a long neck. But if you say the word ’mayin,’ people may have no idea what it means,” he said, explaining that ’mayin’ means ’water’ in Hebrew, and that spoken words can sound like a foreign language to a person with aphasia.
But they want and need social interaction. “People with aphasia may say ’yes’ to everything during a conversation even though they don’t have the foggiest notion of what is being said, because it is the easiest way to maintain social interaction,” Armon told HCN. He added that they may also be able to read letters or words, yet be unable to piece their meaning together.
“That requires a different level of decoding,” he said, adding that, if someone has a transient ischemic attack or mini-stroke, any aphasia that results may be temporary. “And if someone has an acute stroke and is treated immediately, their symptoms may disappear.”
But in most instances, once someone is afflicted with aphasia, the person struggles with it to a certain degree for the rest of their life.
“The ability to recover depends on the initial severity. But there are many factors that enter into it,” Armon explained. “They include what else has been affected and what is left, in addition to environmental issues in families.”
People with aphasia often end up losing their jobs and social contacts. “Most jobs are dependent on communication, so suddenly the person has an ever-shrinking social universe,” Kurland said. “They lose their long-time friends because people don’t always understand them and become less patient, so the person with aphasia often becomes extremely isolated. And when they do go out and try to communicate, people sometimes think they are drunk, deaf, or mentally incompetent.”
McCue agrees. She sees people right after they have had a stroke, and said they often shy away from visitors because they are embarrassed about their inability to communicate.
“Some people just withdraw, while others are angry or frustrated,” Korza said. “Some have no language at all, while others have lots of language but can’t organize it. Although there are different degrees of the condition, it can have a real impact on the person’s life.”
People should be patient when someone has a speech problem and give them time to respond, said McCue, adding that therapists employ a number of strategies to help people access words. These can include having the person with aphasia draw a picture of the word, having them write the first letter because that can sometimes trigger recall, as well as using gestures to indicate what they want.
Armon agrees that a non-verbal approach can be helpful, and says it is especially useful for people with Alzheimer’s disease. “If someone is unable to use words, they may be able to point to a picture of what they want,” he said, adding that it is helpful to meet with a speech therapist to learn about alternate means of communication.
But acceptance can be difficult. “Part of the process someone with aphasia must go through is learning about themselves,” Korza said. “Therapy can range from reteaching the person to speak again to teaching them word-retrieval strategies. We know from research that the brain organizes words in certain ways and therapists can help people access the words they want more easily.”
Simplif ying sentences can also help. “But don’t speak to the person like you would to a child; praise every attempt they make to communicate whether or not it is successful,” McCue advises. “Be encouraging, non-judgmental, and downplay any errors. If they don’t use the correct word but get the context correct, just continue on with the conversation.
“You don’t want them to get discouraged,” she continued. “People think they are helping if they point out mistakes, but it can make the person very self-conscious and less likely to interact.”
It’s also important to try to avoid situations where there is a lot of background noise, because it makes concentration difficult. “Awareness, sensitivity, and support are all important,” Armon said. “Someone with aphasia can still be good company if you go on a walk and interact in a non-verbal way.”
In the past, it was believed that neuroplasticity, or the brain’s ability to change, only applied to infants and very young people. “The old belief was that neurons died off as people got older; now we know that brains are plastic throughout the life span, so you can teach an old dog new tricks,” Kurland said.
McCue agrees. “Most progress is made in the first six months after a stroke or head injury, but patients can continue to improve years or even decades later, which is why it is so important for them to have intensive speech therapy.”
Kurland was recently awarded a $1.75 million grant from the National Institute of Health to conduct a program titled “Overcoming Learned Non-use in Chronic Aphasia: Behavioral, FMRI, and Quality-of-life Outcome” over a five-year period at UMass.
It will allow therapists to study and provide ongoing speech therapy to people who have had a single left-sphere stroke more than six months ago, have moderate to severe aphasia, and whose insurance benefits have run out. “This usually happens before people reach their maximum potential,” he said.
The therapy sessions will run three hours a day, five days a week, for two weeks. At that point, the person will be sent home with an electronic device such as an iPad. Therapists will continue working with them, however, to make sure the device helps them maintain gains made during intense therapy and promote new learning. Anyone interested should call Polly Stoke at (413) 545-4008.
“Our brains are always capable of changing, but they need stimulation,” Kurland said. “People are often given a dire prognosis after a big stroke and a window of time in which they can expect to recover. But they should never, ever give up.”
She noted that research has led to new ways to study the brain in a non-invasive manner, and that a number of things, including support groups, can help.
McCue concurs. “Support groups are a great way for people to meet others who are struggling with communication; they give them a place where they can practice conversation in a non-judgmental setting.”
Although aphasia is difficult to overcome, hope is always on the horizon. “People with aphasia can continue to make gains in speech and language given the right conditions, and we are testing the limits of that right now,” Kurland said, referring to the UMass study.
However, it is important for people with aphasia to have a neurological, physical, medical, and speech-therapy evaluation. “Treatment needs to be individualized,” Armon said.
And conducted in a way that helps people communicate their thoughts and feelings so they can truly be understood.