Shedding Light on Aphasia
Though actor Carl McIntyre has lost most of his abilities to communicate either verbally or through writing, he does not let his disorder prevent him from promoting awareness of his condition.
UC Irvine hopes to do the same through research. UC Irvine’s School of Social Science hosted its first installment of the 2013-2014 Expert Series last Monday, Nov. 18.
Gregory Hickok, professor of cognitive science at UC Irvine, hosted the event which began with a short film featuring McIntyre, the guest speaker on living with aphasia: “Aphasia: Hope is a Four Letter Word.”
After the screening, Hickok shared his current research on aphasia, a neurological condition that causes a loss of language ability due as a result of brain injury.
“We don’t realize how dependent our lives are on our ability to communicate,” he said.
In 2009, Hickok wanted to collect data on strokes and the resulting effects of aphasia. He reached out to other research groups to pool a variety of data. He established an NIH grant-funded group, the Multisite Aphasia Research Consortium.
In 2012, McIntyre became one of the subjects in the pool. Like all other participants, he went through a sequence of language tests which included speech output generation that researchers used to determine fluency, which is naming objects in pictures (something most aphasics are not able to do) and discriminating between different speech sounds (such as “ba” and “pa”). These tests helped to characterize McIntyre’s language problems.
With this data and high-resolution MRI scans from a large pool of research participants, researchers in the consortium are working on mapping the areas of the brain that, when damaged, produce a certain type of deficit.
“It’s figuring out how something works in the first place that leads to ideas about how to cure things. Based on the basic research we’re doing, plus some of the behavioral deficits that we see in aphasia, it is suggested that we might be able to develop in the future some sort of electrode neuroprosthesis,” Hickok said.
Before the stroke, McIntyre was an actor and a very successful salesman with a “golden tongue.” Though he still has his tongue, his brain has lost its mastery over it.
More than 20 percent of stroke patients acquire aphasia. It is estimated that about one million people in the United States live with this condition — twice as many as those with Parkinson’s disease in the United States — with approximately 80,000 acquiring the disorder every year. Though stroke is the most common cause of aphasia, traumatic brain injury, brain tumor, epilepsy and other neurological causes are also known to induce the disorder.
“Every stroke is different. Same, but different,” McIntyre said.
For him, the stroke cut off oxygen to the areas in his brain that appear to be correlated with language function. Without oxygen, these brain cells die. They cannot regenerate themselves, unlike other cells in the human body.
The particular type of aphasia that McIntyre acquired, Broca’s aphasia, is recognized as expressive or non-fluent aphasia, non-fluent referring to the fact that the person has difficulty producing fluent speech.
This difference is seen when compared to people who acquire Wernicke’s aphasia, which is also known as receptive or fluent aphasia. Those who have Wernicke’s aphasia appear to communicate fluently, but speak with complex, extended sentences that include incorrect, unnecessary and sometimes unidentifiable words.
Aphasia is often confused with verbal apraxia, a disorder of motor planning and the loss of the ability to carry out learned, purposeful movements of speech despite having the desire and physical ability to perform the movements. Aphasia is impairment in the ability to properly produce thoughts with language verbally and through writing.
McIntyre went through a period of depression after his stroke, something commonly faced by aphasiacs.
Often times, he felt that he was trapped in his head because, initially, he was completely unable to communicate with those around him.
With his condition, he had great difficulty finding a job. He described this time as a “bad time, really dark time.”
With years of therapy and support from those around him, he came to accept his condition.
“Maybe I don’t speak again, but I’m still here, I’m still relevant. And no fear. Fearless. Hope. I need hope every day. No hope? Dead.”
Instead of letting aphasia hinder his life, McIntyre uses his story to encourage others. Now, he is on tour and uses “Aphasia,” the movie written and produced about him by his long-time friend Jim Gloster, to further his life’s work — promoting awareness of his condition so that more people can understand aphasia.
The humorous, but moving, presentation echoes McIntyre’s personality.
“Aphasia still sucks but I win every day,” he said at the end of the lecture.
Professor Hickok is one of the researchers working to help support McIntyre’s life’s work on raising aphasia awareness.
“Because aphasia is so underappreciated, people don’t know what it is even though it is very common,” he said.
“The kind of work that Carl is doing is very important because if more people know about aphasia, if they know about how devastating it can be and if they know how common it is, if we raise public awareness, we might be able to push the research forward a little more quickly, and I think that’s an important thing.”