VOH members guess each other’s weekend activities in ‘You did what?’ game. Credit: Photo c/o Voices of Hope For Aphasia

For people with the language processing disorder Aphasia, playing games is a fun way to practice speech and connect with others. For the rest of us, games grant a welcome break from everyday responsibilities. On Thursday, June 8, games provide common ground at Voices of Hope for Aphasia’s inaugural Crossword Puzzle Gala.

Aphasia affects a person’s ability to communicate their thoughts and feelings. And it’s more common than you might think. An estimated 200,000 people are diagnosed with Aphasia every year, most after a stroke or traumatic brain injury damages a portion of their brain used for language processing. Although Aphasia can dramatically affect a person’s speech, it doesn’t affect their intelligence or awareness of what’s happening around them.

“A person with Aphasia knows things about the world, can interact with the world, and can make decisions for themselves,” says Debbie Yones, Executive Director of Voices of Hope for Aphasia. “They just might not be able to tell you. And in some cases, they may not understand what you’re asking.”
Finding your words after suffering a traumatic event takes time and money. Not everyone has the resources for the level of speech therapy needed to reach their full post-stroke potential. That’s why organizations like Voices of Hope for Aphasia are essential. The St. Pete-based nonprofit, now in its 10th year, provides speech therapy to Tampa Bay residents experiencing Aphasia at no cost.

“In general, with any language, if you don’t use it, you lose it…” says Yones. “Voices of Hope for Aphasia was established to give people the opportunity to continue to use language and develop communication in whatever form that might be. So for some, speech has improved. But our goal is that everybody communicates in whatever way possible.”

For people with Aphasia, speaking can be exhausting. Part of the challenge for speech therapists like Yones is finding what motivates them to speak.

“It’s exhausting to have to fight for every single word all day long,” says Yones, “And people with Aphasia are fighting all day and pushing themselves all day. The things that people are willing to do are the things that are of interest to them, things that are engaging, things that help them participate in life.”

Things like games.

“My personal favorite is a new game that we invented,” says Yones. “It’s called Cluefish.”
“We play Go Fish with Clue cards,” Yones elaborates. “So, do you have Professor Plum? And whoever we collect the most cards of is the suspect. So, if we have collected all four of Professor Plum, then Professor Plum is the suspect. We do that with the weapon, and we do that with the room. Then at the end, once we have all three, we use it as a language activity to collectively tell the story of what happened….”

Cluefish is one of many games that the group plays together. During the pandemic, Voices of Hope added a virtual family game night to help keep members stay connected and practice their speech.

“And this was a way for the whole family to get together,” Yones told Creative Loafing Tampa Bay. “So, it wasn’t just the person with Aphasia participating in a game. It involved the whole family, and they competed against each other. We did two things. We had a Family Feud style game, and then we had a combination of Pictionary and charades, where we put the speech therapists—the group leaders—on the spot to either draw terribly on Zoom or act something out.”

Early in the pandemic, Voices of Hope conducted a video interview with stroke survivor Amy Walters and her husband, Dave Billingsley. Games were among the first things they mentioned when the nonprofit asked the pair what they like most about being a part of Voices of Hope for Aphasia.

Walters and Billingsley’s faces lit up as they spoke of Family Game Nights.

“I laughed the whole time,” Billingsley said. “I’m so grateful to get to be a part of it…to get to join in on what’s really the Aphasia group, with a fun activity where everybody’s laughing is a really special thing.”

Walters and Billingsley’s life changed in 2017 when Walters experienced a stroke while attending the annual meeting of the Society of NeuroInterventional Surgery in Colorado.

“Aphasia changes everything for everyone…” says Billingsley. “Language, whether written or spoken, is a fundamental thing that allows us to have the experience of being human and to share that experience with others.”

Walter’s seen stroke from both sides—as a medical professional and patient. Before her 2017 stroke, she worked in the medical device industry, organizing clinical trials of medical devices used to treat cerebral aneurysm and acute stroke. She describes having this additional knowledge as “a double-edged sword.”

As a medical professional, Walters knew she was having a stroke. But when she phoned her colleague, neurosurgeon Adam Arthur (the Past-President of the Society for Neurointerventional Surgery), for help, her words came out as gibberish. She remembers saying, “Help. I’m crashing.”

Her next memory is three weeks later, freshly discharged from the ICU, on a Life Flight from Colorado to Shepherd Center in Atlanta, for long-term care and rehabilitation.
At the time, Walters couldn’t even say “Hi.”

It took the Harvard grad two-and-a-half months, working with a speech therapist two hours a day, to utter the simple greeting.

Now, Walters attends a VOH-hosted book club (they’re currently reading “The Maid”) and speaks on behalf of Aphasia/stroke patients at medical conferences. But it was a long road to get to that point—three weeks in the ICU followed by four-to-five months of acute care, rehab at the Shepherd Center, and five sessions of intensive speech and language therapy at the University of Michigan Aphasia program.

“I’m not sure what to say about intensive therapy,” Billingsley told CL. “It works. It’s really expensive. Let’s say there are about 2-4 million people in the U.S. who could benefit greatly from it, especially if they’re motivated. But it’s $30,000 a pop without housing and all that stuff. So, it’s prohibitive for a lot of people not covered by insurance.”

When I asked Billingsley what he thought was key to living the best life you can with Aphasia, he said, “Intensive speech therapy helps. An understanding community helps…You know what helps? Money helps.”

That’s why Billingsley’s happy to help organizations like Voices of Hope for Aphasia that provide speech therapy to those who can’t afford it.

On Thursday night, June 8, you can help, too, by attending the “Word Play” gala in Clearwater. And you can do it with a fun night of games.

Voices of Hope worked its local connections to get a custom crossword puzzle designed by Patrick Berry for their inaugural Crossword Puzzle Gala. Berry literally wrote the book on crossword construction (it’s called “The Crossword Constructor’s Handbook”). Tables of eight race to be the first to complete the puzzle.

“We’ll have other word games throughout the night,” Yones told CL. “They’ll be Wordle while people settle in, and then there’ll be a word search. The word search is the thing that’s most accessible to people with Aphasia. They’re not going to be able to do crosswords.”

Whether you struggle to communicate or not, games are a great way to share an experience with a loved one. So, this Thursday, consider doing a crossword for someone who can’t and help raise money for a worthy cause at the same time.

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