Artists draw inspiration from Summerlin man’s rare speech disorder

The Sun City Summerlin resident has a condition called Wernicke’s aphasia, also known as fluent aphasia.

Unlike non-fluent aphasia, where speech is severely limited, Byron speaks easily and smoothly. But his ability to connect words and meanings is impaired, causing him to speak what his wife, Donna, describes as “word salad.”

“With Wernicke’s aphasia, you’re not saying the right words,” she explained.

The condition is so unusual that Tactus Therapy, which makes speech therapy apps, in 2015 recorded a YouTube video of Peterson speaking to serve as an educational resource for colleges and universities.

The video proved very popular, amassing more than 2.2 million views. But its appeal wasn’t limited to its intended audience of speech pathologists and researchers.

As a result of the video, Peterson became the inspiration for Gurty, a character in the “The Ice Road,” a thriller starring Liam Neeson released last month by Netflix.

Megan Sutton, a speech-language pathologist and co-founder of Tactus Therapy, recorded the YouTube video of Byron during an Aphasia Recovery Connection cruise to Alaska. She begins by asking him, “How are you?”

Byron, who is smiling, responds: “I’m happy. Are you pretty? You look good.”

He continues answering questions, but the meaning of what he’s saying isn’t always clear. As Sutton wraps up, she says “Thank you very much.”

Byron responds: “Thank you very much. I appreciate it. And I hope the world lasts for you.” He finishes by saying, “Have a good day.”

Donna said it feels good to know the video has raised awareness about aphasia. “The more that’s known about it, the better.”

What’s aphasia?

Aphasia is a broad group of disorders that affect language ability — both comprehension and expression, said Angel Ball, speech pathology professor and program director at Nevada State College, who specializes in the condition.

More than 2 million people in the United States have aphasia, according to the National Aphasia Association. But Ball said there is really no data she has encountered about how common Wernicke’s aphasia is specifically.

Strokes are the most common cause of aphasia.

There are a few hallmark features of Wernicke’s aphasia, Ball said, including that auditory comprehension is poor, meaning the person is not necessarily understanding what they hear someone saying.

“(But) they are fluent, meaning there’s no problem with the articulation pattern of their speech,” Ball said.

Those affected are able to put together long sentences, and the rhythm of their speech also sounds fairly normal, she said.

But people who have Wernicke’s aphasia tend to display an inability to select the right words, Ball said. “They have a severe naming problem. In some cases, they don’t even say real words.”

Ball has shown the YouTube video of Byron to students as a teaching aid but didn’t realize he was a Las Vegas resident.

In the video, he’s not answering questions appropriately but is animated and carries on a conversation, Ball said.

Wernicke’s aphasia is fascinating because the person affected doesn’t know how their speech is coming across, Ball said. “As far as they know, they’re making total sense.”

Inspiring creative pursuits

The YouTube video featuring Byron and highlighting Wernicke’s aphasia has had a particular impact on artists who have seen it.

“The Ice Road,” which premiered June 25 on Netflix, is about an ice road trucker who embarks on a perilous mission to transport equipment that is needed to rescue trapped miners after a diamond mine in northern Canada collapses.

The character of Gurty, a military veteran and mechanic who has aphasia, was “very much inspired by Byron,” producer Al Corley said in an email to the Review-Journal.

And it wasn’t just his speech rhythms and patterns that caught the attention of the film’s director and writer, Jonathan Hensleigh, “but also his winning attitude and upbeat personality,” Corley said.

“And although we never actually met Byron or spoke to him, we were quite taken by him,” he said. “Likewise, the actor Marcus Thomas, who played Gurty, studied his mannerisms, physical gestures and vocal quality … and was equally inspired by Byron.”

Donna and Byron Peterson watched “The Ice Road” last weekend at a neighbor’s house.

Donna said that it was a fantastic movie and that the character of Gurty showed realistic aphasia symptoms.

What stuck out to Donna: Gurty repeats some words three times in a row — something Byron also does. For instance, when Byron encounters too much noise or too many people talking, he will say, “Talk, talk, talk.”

Massachusetts-based playwright Peter Kennedy also saw the YouTube video of Byron, and one sentence Byron uses — “And I hope the world lasts for you” — stuck with him. He requested and received permission to use it in his play, “Family Game Night.”

A staged reading is scheduled for October in Provincetown, Massachusetts. The play stars award-winning actress Kathleen Turner, who will be delivering that line.

‘Beautiful, accidental poetry’

In the play, one of the family members brings a game that is meant to spur a conversation about death, dying and end-of-life choices, Kennedy said, and there are multiple viewpoints among the family members on the subjects. The play includes flash-forwards to see how those choices begin to play out.

One of the characters in the play has Wernicke’s aphasia. When Kennedy began researching it, he made a discovery: “There’s just this kind of beautiful, accidental poetry sometimes in the way they’re speaking,” he said.

There’s something profound about the line Byron uses, whether it was expressed knowingly or unknowingly, Kennedy said.

Donna also gave permission for a 20-second clip from the YouTube video to be used in a documentary that aired on the BBC.

But not every request gets green-lighted.

Donna said she rejected a request from an unidentified rap artist who wanted to use Byron talking in the background of a song.

“We thought it was kind of making fun of Byron, so we didn’t approve it,” she said.

In his younger years, Byron graduated from the Massachusetts Institute of Technology, where he earned a bachelor’s degree in metallurgy, and Northwestern University, where he earned a master of business administration degree.

Both he and Donna worked as systems analysts, including in Saudi Arabia for 15 years.

But life changed forever on May 20, 2010.

Around 3 a.m., Byron fell out of bed. He seemed fine, though, and refused to go to the emergency room when Donna checked on him.

When they got up at 7 a.m. and made coffee, though, a mug fell out of Byron’s hand. That’s when they knew something was wrong.

After going to an emergency room, they were informed Byron had suffered a stroke. Since it had been hours since the first stroke symptom appeared, it was too late for Byron to receive a clot-busting drug.

They also learned in the emergency room that Byron had Wernicke’s aphasia — something the couple had never heard of. ‘You learn a lot as you go’

Donna said one of the scariest things was bringing Byron home from the hospital when she couldn’t understand what he was saying. But, she said, “You learn a lot as you go.”

They were told all the improvement Byron would ever see would come within 90 days after his stroke, but that turned out not to be true. He has shown improvement over the years, Donna said, but she’s resigned to the fact that he won’t get back to 100 percent.

Now, Byron does speech therapy two or three times a week and also participates in music therapy once a week — all via video conferencing.

He can read text in capital letters. And he’s starting to read lower case letters too and is relearning how to write.

Byron rides the Regional Transportation Commission of Southern Nevada’s paratransit vehicles and can go to doctor’s appointments on his own.

Summerlin support network

The couple have received support from their neighbors in Sun City Summerlin, who’ve gone out of their way to learn about aphasia, Donna said. Byron even gets invited to men’s nights.

“Everybody looks out for him,” she said.

Shortly after the couple moved in, Donna held a party so she could introduce her husband to the whole block. Now, Byron has phone numbers in his cellphone so he knows who he can call or which neighbor’s door to knock on if he needs something.

“It’s the freedom to live a normal life,” Donna said.

At parties with neighbors, Byron can stay as long as he’s comfortable, Donna said, adding, “I trust him to go home.”

Donna said she has met many wonderful people who are kind to Byron and is grateful that he’s accepted.

“My biggest thing is to make sure he’s happy,” she said.

Contact Julie Wootton-Greener at jgreener@reviewjournal.com or 702-387-2921. Follow @julieswootton on Twitter.