Sitting next to his wife, CeCelia, Wayne Zorn looked at the binder in front of him as the music from “The Rose” began to play.
“Some say love, it is a river that drowns the tender reed,” the 66-year-old Wayne sang in his rich voice as his wife pointed to the lyrics and pictures in the binder. “Some say love, it is a razor that leaves your soul to bleed.”
When they met in the 1960s, Wayne sang often — in the car, in the shower, on a picnic, recalled CeCelia, who married Wayne in 1974.
“He knew every word in every song,” she recalled. “It was magical, and I was riveted.”
But a rare neurological disease — primary progressive aphasia — is expected to steal his voice one day.
For now, CeCelia and others, including Tania Riske, a speech-language pathologist at Mayo Clinic Health System in Eau Claire, are focusing on giving Wayne a voice.
“It’s not Wayne’s old voice,” Riske wrote in a piece she co-authored with CeCelia. “Aphasia continues to chink away relentlessly at his power to express his thoughts, ideas, wishes and dreams. We can’t recover what is lost, but we can cherish his identity and determination ...”
Having problems finding the right words, Wayne went to see the couple’s internist at Mayo Clinic Health System in 2014. Doctors ordered testing, including an MRI and CT scan, and it was quickly determined Wayne had primary progressive aphasia, or PPA, which results from the deterioration of brain tissue important for speech and language.
Before Wayne was diagnosed with PPA, neither he nor CeCelia had heard of the syndrome, which affects a person’s ability to communicate.
People with PPA can have trouble expressing their thoughts and finding and understanding words, and they can lose the ability to speak, write and eventually understand written or spoken language, according to Mayo Clinic.
When her husband was first diagnosed, CeCelia told people Wayne had “a hard time finding the word he (wanted) to say.” Those she confided in often responded with an attempt at understanding, saying they had experienced something similar, such as forgetting a cousin’s name, or joking about getting old.
“Wayne smiled at all of this,” CeCelia wrote. “But I wanted to scream, ‘This isn’t about forgetting a name. It’s not about getting old … This is different.’”
PPA can’t be cured, and there are no medications to treat it, according to Mayo Clinic. However, there are some therapies that might help improve or maintain a person’s ability to communicate, and Wayne and CeCelia have been open to trying anything.
That has included meeting regularly with Riske for therapy. Since joining Mayo Clinic Health System in 2010, Riske has seen four patients with PPA, including Wayne.
“The tricky thing about PPA is it’s a progressive disease,” Riske said. “It’s not going to get any better.”
Symptoms begin gradually, often before age 65, and worsen over time, according to Mayo Clinic. Because PPA progresses slowly, people like Wayne can continue to care for themselves and participate in daily life activities for several years after onset.
“My goal (in working with a patient with PPA) is determining where this person is at in terms of progression of the disease and figuring out how we can support independence … and keep life as normal as possible,” Riske said.
Wayne is one of the most fascinating people she has ever known.
“He’s traveled the world,” Riske wrote. “He eats sushi proficiently with chopsticks, crafts beautiful stained glass artwork and racks up noteworthy golf scores. He’s cool and cultured, but (he is) still outdoorsy and can can fix anything. Wayne is a dying breed in today’s world.”
Wayne also was a coach driver, and he took tour groups to almost all 50 states before GPS existed, CeCelia said. “Pages he printed from MapQuest hung by his steering wheel — from Los Angeles to Boston, Miami to Anchorage. He made it look so easy. Now, although the GPS helps, he is not able to negotiate unfamiliar places and their road signs.”
However, Wayne can navigate his way to familiar places — his friend Joel’s home and Lake Hallie Golf Club, where he plays golf regularly in the warmer months. (Interestingly, since Wayne was diagnosed, his golf scores have continually gotten better.)
He loves to work jigsaw puzzles, listen to music and audio books, and draw, which he uses to communicate. He also sings in the Stand in the Light Memory Choir and is performing at 6:30 p.m. Thursday during the opening reception for the “Health + the Arts” exhibition at UW-Eau Claire’s Foster Gallery.
“It’s sometimes hard for me to schedule a time to meet with Wayne because he is such a busy guy,” Riske said, chuckling.
Living with PPA
Kidding aside, PPA “can really be an isolating condition” as the person loses his or her ability to communicate, Riske said.
“Over the past year, I’ve witnessed Wayne’s language change from hard-won short sentences to a smattering of single words and automatic phrases,” she wrote in the piece she co-authored with CeCelia, which was published online Nov. 1 at journalofhumanitiesinrehabilitation.org.
His “go-to words” change, wrote CeCelia, sharing a funny story about her husband’s repeated use of “constantly.”
“During a clinic visit, a medical assistant hammered through the usual questions (Do you smoke? Has your weight changed recently? Do you feel safe at home?). … Then she asked, ‘Do you drink?’ and, you guessed it, Wayne smiled and said, ‘Constantly.’”
Her husband’s failing ability to think, problem-solve and plan, though, extends beyond repetitive words or phrases. He’s unable to make or take phone calls, and his contribution to conversation is limited — even though he is skilled at drawing, gesturing and using apps on his iPad to communicate.
“Sometimes I just don’t get it, though,” said CeCelia, referring to what her husband might be trying to convey. (During an interview at their home recently, I didn’t either as Wayne smiled and showed me a drawing he did on his iPad as he said, “Yeah, but like that.” Recognizing I didn’t understand, CeCelia suggested I move closer to her and Wayne, and then it clicked. Wayne had drawn a picture of a pileated woodpecker, which was dining outside the window. When I got it, Wayne smiled and repeated, “Yeah, but like that.”)
“CeCelia is an exceptional support person,” said Riske, noting CeCelia attends and participates in Wayne’s therapy sessions. “She is patient, creative and always seems to know what to do at the right time for her husband.”
For his part, “Wayne has always been an excellent patient,” said Riske, who has been working with him for 2½ years. “He’s courageous in what he is willing to try, he is patient and he is diligent in making sure his message is being heard.”
Hoping to shed light on PPA, Wayne granted permission for CeCelia and Riske to co-author their piece, “Three Voices at the Table.” He and CeCelia also agreed to share their story with the Leader-Telegram, and next month the couple, with the leadership of Tom Sather, an assistant professor in the communication sciences and disorders department at UW-Eau Claire, will be doing two presentations about PPA at the Leadership Summit offered by Aphasia Access in Baltimore.
“Our hope is that his gracious generosity helps others,” CeCelia and Riske wrote.
Mine too. Thanks, Wayne.