Elmont native helps raise aphasia awareness

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Angelique Jean-Charles, 23, knew she wanted to help children with communication disorders while still a student at Valley Stream North High School, after seeing a speech pathologist work with students. But during her first year as a graduate student in SUNY Cortland, Jean-Charles added another goal for herself when she began working with an adult patient with a peculiar disorder. He had aphasia.

More than 2 million people in America live with aphasia, a communication disorder that impairs a person’s ability to process language, according to the National Aphasia Association.

Jean-Charles said that the man, a professor, began having troubling speaking with and understanding people around him. “What’s important to note is that people with aphasia still retain their intelligence, they just have trouble getting their thoughts out,” Jean-Charles explained.

Aphasia is most commonly caused by a stroke, where about 25 to 40 percent of stroke survivors some degree of the disorder, according to the Centers for Disease Control and Prevention. Even though aphasia is more common than Parkinson’s, muscular dystrophy and cerebral palsy — with 180,000 Americans acquiring the disorder every year — aphasia is still unknown to most people.

According to the NAA’s 2016 Aphasia Awareness Survey, about 85 percent of people in the US have never heard of aphasia. In order to combat this lack of awareness, Jean-Charles joined a program this summer where she works with the Cortland Regional Medical Center to help medical professionals understand and better deal with patients who have aphasia.

“They’re spreading the word that might help people in our community who are having communication challenges,” Professor Eileen Gilroy said in a statement to her students in her Communication Disorders in Adults class.

Jean-Charles and her classmate, Marisa Spagnolo, works with the staff of the medical center and gives lectures and presentations on how the staff and emergency responders should interact with people with aphasia. For example, she advises for people to talk slowly and clearly, to draw pictures or write things down as they communicate and avoid relying on yes or no questions when speaking with someone with aphasia.

“Even if it’s a little harder, we want people to ask probing questions to better help the patient because they might not give the right answer in a yes-or-no scenario,” Jean-Charles added.

But because aphasia patients have trouble communicating, people often think that the person must have some sort of mental illness or disorder. The NAA’s survey found that about a third of people in the US think that someone who is having difficulty with speech must have an intellectual deficiency.

Margaret Woodworth, another one of Jean-Charles’s classmates, said even medical professionals can get frustrated with patients with aphasia when dealing with simple matters, such as asking for coffee, when they really meant to ask for was water. To address this particular issue, her team created a picture menu so patients could simply point to their choices.

“To get the wrong thing or to not be able to say, ‘I want salt and pepper on this,’ it’s so frustrating,” Woodworth said. “It gives them their quality of life back.”

People with aphasia even face trouble with police. During a lecture on July 20, Jean-Charles and Spagnolo told the story of an aphasia patient who was pulled over by a police officer and mistaken for someone who was intoxicated, because they could not speak properly. Jean-Charles said that greater awareness of the disorder could help avoid these situations.

Jean-Charles will continue her advocacy work and graduate studies in Cortland, where the city’s mayor declared June National Aphasia Awareness Month. Although Jean-Charles hopes to become a speech pathologist at a school that works with children, her experience at Cortland inspired her to work at a hospital with adult patients who suffer from communication disorders.

“The goal is to support them and help the patients find a way to return to a sense of normalcy, because they will be dealing with this for the rest of their lives,” she said.