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FARGO — Terri Barta breezed through most of the tests during a recent medical exam including a reflex check, following an object with her eyes and squeezing her doctor’s hands.
But she got hung up when Dr. Tonya Harlow asked her to bring her arms up and pull toward her.
“Ah, just a minute,” Barta said. “I have to think about what you said.”
“Take your time,” Harlow said, before her patient was able to complete the task.
Barta then was asked to repeat the phrase, “The orchestra played and the audience applauded,” causing her to stumble and reach for the words.
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“That was a tough one, for sure,” said Harlow, a neurologist and movement disorder specialist at Sanford Health in Fargo.
Barta, 70, from Lisbon, North Dakota, deals with aphasia, the same collection of symptoms cited for prompting Hollywood actor Bruce Willis, 67, to step away from his career at the end of March.
Aphasia is a loss of a person’s ability to communicate, whether speaking, reading, writing or understanding language, Harlow said.
It’s a symptom of many diseases, she said, most commonly stroke, but also brain trauma, infections, certain tumors and dementia syndromes.
In Barta’s case, the diagnosis is primary progressive aphasia or PPA, a neurodegenerative, cognitive disease that falls within the dementia realm.
Her friendly, chatty demeanor is interrupted now and then as she searches for words that should be easy to recall.
“What’s funny is, I like to talk, obviously. And so it's just kind of like, ‘What? I've got what?’” she said with a laugh.
All in the family
Barta said her symptoms first became apparent sometime in 2017.
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She’d retired from her job at the local newspaper and was doing some preschool and substitute teaching.
Several times, her young students would notice and point out mistakes, for example, when she left out or added a letter to the alphabet.
Barta used to be an avid reader, and though she still scans newspapers and magazines, she can’t seem to stick with a whole book anymore.
Symptoms were mild, at first, but gradually became more pronounced.
A series of in-depth tests followed, including MRIs and PET scans, which showed changes in the way her brain was functioning and helped point to primary progressive aphasia.
Her older brother had been diagnosed with PPA years prior and was convinced she had it, too.
“I'm getting to see what's going to happen, which is not pleasant, necessarily,” she said, referring to her brother’s condition.
But she joked they’ll eventually have their own way of communicating, and “nobody else will know,” she said.
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There’s a chance Barta’s case is genetic, given that her brother has the same disease, Harlow said.
“The expectation is … her symptoms will get worse over time,” she said, adding, “Everybody’s path and how quickly that happens can be different.”
Barta was sad to hear Willis is dealing with aphasia, but glad his status and visibility might bring more attention to it.
Therapy, lists and choosing joy
The only way to be 100% certain about PPA or dementia-related syndromes is to do a brain biopsy, which obviously is not done on a living person, Harlow said, so the vast majority of diagnoses are presumptive.
While a person can’t change their genetics, risk factors can be modified with lifestyle choices, including physical activity and following a healthy diet.
Barta works on speech therapy almost every day to stall further declines in language function.
She makes lists of tasks she needs to get done and frequently will write down a thought or idea that comes to mind.
“Two hours from now, you won't remember what it was,” she said.
She takes walks and goes to the local senior center for lunch several times a week for social interaction, and a good friend checks in on her every day.
Barta also cited her relationship with God and her sense of optimism for helping her deal with the diagnosis.
“I decided I was gonna live the rest of my life with joy,” she said.
A continued decline in ability to communicate will come, but Harlow said her patient is equipped to deal as best she can.
“She's got such a great attitude … that's going to serve her well,” Harlow said.
