Aphasia and the Actor

He used to be a salesman and actor with a “golden tongue,” but his stroke left him unable to read, write and speak.

At one point in his life, Carl McIntyre was a successful salesman and an actor that received roles in commercials, television shows and even movies. He appeared in One Tree Hill, Dawson’s Creek and Warm Springs. Though none of his roles were particularly big, simply getting roles in the entertainment industry indicated that he had the ability to act and perform.

“Everything that Carl did involved speech, whether it was acting or sales,” McIntyre’s wife, Elizabeth McIntyre, explained. “His whole life was his voice.”

The evening of September 15, 2005 seemed to take all of it away from him. It started when a large blood clot dislodged from his heart, traveled up to his brain and got stuck in a major artery. McIntyre began losing feeling in his right arm and leg as the clot blocked oxygen-rich blood from reaching the capillaries that supplied oxygen to the left hemisphere of his brain. Without oxygen, his brain tissues began dying. Unlike other tissues in the body, the brain does not regenerate.

Doctors later discovered that about 85 percent of his brain’s left hemisphere was damaged, and that his stroke had taken away his brain’s speech production ability away.

Ever since his stroke more than eight years ago, McIntyre has lived with aphasia, a loss of language ability due to brain injury. McIntyre is one of more than 20 percent of stroke patients that acquire aphasia, and it is estimated that about one million people in America live with this condition, double the number of people living in the United States with Parkinson’s disease, 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.

With more people diagnosed with this condition than spinal cord injury and cerebral palsy combined, it is surprising that it virtually nonexistent to the general public.

Gregory Hickok, UC Irvine cognitive sciences professor and Center for Language Science director, put it best when he stated, “The most difficult part about studying aphasia is that no one knows what it is.”

Hickok decided to look more closely into aphasia research in 2009 and established an NIH grant-funded, Irvine-based research group called the Multisite Aphasia Research Consortium to gather more data about the little-known disorder.

In 2009, McIntyre became one of the subjects in the research group. Like all other participants, he went through a battery of language tests which included speech output generation that researchers used to determine fluency; naming objects in pictures, something most aphasics are not able to do; and discriminating speech sounds (such as “ba” and “pa”). These tests helped characterize McIntyre’s specific language problems. With this data and high-resolution MRI scans of the consortium’s research participants, scientists are working on mapping the areas of the brain that, when damaged, produce a certain type of communication deficit.

“It’s basic research, it’s not really aimed in particular to cure aphasia… but the fact is that it’s figuring out how something works in the first place that leads to ideas about how to cure things,” said Hickok. “We don’t realize how dependent our lives are on our ability to communicate.”

McIntyre is very aware.

Doctors had diagnosed him with Broca’s aphasia, a specific type of aphasia recognized as expressive or non-fluent aphasia because the person has difficulty expressing fluent speech. Another prevalent type of aphasia, Wernicke’s aphasia, is known as receptive or fluent aphasia. Those diagnosed with Wernicke’s aphasia appear to communicate fluently, but speak with complex, extended sentences that include incorrect, unnecessary and sometimes unidentifiable words.

His doctors also told that after eighteen months following his stroke, even with speech therapy, his speech recovery rate would plateau and his chances of full recovery would become unlikely. After a year, McIntyre could only communicate a handful of phrases, but he kept learning. Though at a painfully slow rate, he kept learning up to the 18 month mark his doctors had set. Then, he shocked doctors when he kept learning more.

Today, Carl McIntyre is in his 50s and has a receding hairline of graying dark brown hair. His eyes are also dark brown, trained by years of acting to be expressive as the rest of his body. He tours around the world as a motivational speaker with a short film about his life.

McIntyre has made it his life’s mission to spread awareness of aphasia and encourage people with his story. More than eight years after his stroke, he is now able to talk about his life, answer interview questions and engage in conversations.

His remarkable recovery inspired a friend to write and direct a movie about McIntyre’s life struggle called, “Aphasia the Movie.” In the 40-minute film, McIntyre stars as himself, showing how his life was changed after he acquired aphasia and his journey to recovery. The short film has received many awards, recognized as the 2010 winner of the Big Bear Lake International Film Festival, 2011 winner of the Feel Good Film Festival of Los Angeles and the 2012 winner of “Left Us Wanting More” of The Other Film Festival in Melbourne, Australia.

Though he has regained the ability to communicate, his aphasia still makes it difficult for him to form free flowing and grammatically correct sentences. Sometimes, his difficulty finding and forming words is evident in his body language: his gaze lowers, his brows furrow and he makes a grasping motion with his left hand. Many other aphasics do not reach this point of communicative fluency.

“After stroke, everything is different. I no more speak and no write and read. Nothing… I never a million years movie again,” McIntyre commented with a smile and chuckle. Though he no longer has complete control over his communicative facilities, he has transformed his personal story of trauma into an inspirational story to be shared with the world.

Professor Hickok is one of the researchers working to help support McIntyre’s life’s work on raising aphasia awareness. He explained, “Because aphasia is so under appreciated — people don’t know what it is even though it is very common. The kind of work that Carl is doing is very importance 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.”