Minneapolis woman, losing speech to Parkinson’s disease, works to communicate via a documentary

Some people could finish a whole sentence in the time it takes Jackie Hunt Christensen to speak a single word.

Each of her words stretches out like a recording played at slow speed but without that deep, sludgy pitch. Her voice is faint, pauses between words are long, and sentences drift slightly upward at the end before they fade.

But if Parkinson’s disease has eroded the Minneapolis woman’s vocal clarity, Christensen’s determination to communicate is still strong. She speaks in whole paragraphs, embellished with colorful metaphors and wry humor.

“I ‘graduated,’” she said recently, fingers gesturing the silent quotation marks. She was telling about having been placed in hospice about a year ago, until it became clear that death was not imminent.

“It felt like, for whatever reason, the universe isn’t done with me yet,” she said.

Nor vice versa, apparently.

All her life Christensen, 60, has used her voice, both literally and figuratively, to make the world a better place. From the late 1980s to the early 2000s, she was an environmental health activist, working for Greenpeace and other organizations.

When she was diagnosed with early-onset Parkinson’s at 34, she became a national advocate for people with the disease, in myriad roles including serving as a state coordinator for Parkinson’s Action Network; organizing, attending and speaking at conferences; writing two books about Parkinson’s from a patient’s perspective, and serving as a patient-representative to the Food and Drug Administration

Now, her voice fading, she is working on a documentary called “Come Talk to Me” that will tell her story.

Christensen uses a wheelchair — she hasn’t walked in two years. She has lost considerable dexterity in her hands. She has suffered a stroke. Her emergency room visits are frequent.

She has undergone several surgeries to implant or repair deep-brain stimulation devices, which reduce Parkinson’s tremors and rigidity by sending electrical impulses into a precise area of the brain (”Like threading something smaller than a piece of spaghetti into a jelly bean,” she explained). Implant surgery lasts up to eight hours, during which patients stay awake so their responses can help doctors find the right location.

But gradually losing the ability to speak loudly and clearly over the past 10 years or so has been a particularly devastating part of her Parkinson’s journey.

Christensen uses an AI-powered assistive device that lets her create a human-sounding voice — like Apple’s Siri or Amazon’s Alexa — by typing words, pressing icons or drawing pictures. It can even recreate her own voice using a recording made before her speech was affected. The device can also save often-used statements to be called up quickly when needed.

“What often happens is that by the time I’m done formulating what I would have said if I didn’t have Parkinson’s, then typing that in, the conversation has moved on and my comments are moot,” she said good-naturedly. “But I’m too damn stubborn, so far anyway, to do it differently.”

The assistive technology has been available for eight to 10 years but “has improved hugely in the last one to two years,” said Caitlin Mueller, director of clinical sales and marketing for Lingraphica, manufacturer of the device, which goes out to about 3,000 people a year, she said. In addition to Parkinson’s, strokes, traumatic brain injuries and autism are among conditions that can hinder speech.

In characteristic fashion, though, Christensen minimizes her use of the AI technology “because of the vast amounts of energy it uses,” she said. “I’m convinced that all of the world’s climate change efforts will be for naught if AI is allowed to proceed unchecked.”

The prospect of eventually losing the ability to speak altogether “is absolutely terrifying and frustrating and anger-inducing,” she said.

“What is extremely unhelpful (from my perspective), yet completely understandable from the perspective of anyone who doesn’t have Parkinson’s disease, is when my equally frustrated, overwhelmed care partner and husband of 35 years [on Labor Day] blurts out things like, ‘I didn’t understand a word that you just said!’”

Some days are better than others, said her husband, Paul Christensen. Her speech is clearest when she has timed her medication, gotten enough sleep, and feels well. Other times, he has to ask her to repeat things two or three times.

“The last couple years have been very frustrating for both of us, because of that, but we’re figuring it out,” he said. “You just deal with things as they develop — or [as they] disintegrate.”

Christensen’s speech problems began some time before she became aware of them. Friends and family didn’t mention any problems. But she began to notice people saying, “Could you repeat that?” more often than usual.

Finally, in 2020 a young boy at a garage sale asked, “Why do you talk so slow?”

“I said, ‘I’m not talking slow,’” she said. “I thought I was fine — in my head, I sounded just like I always have. ... But now I recognize [my speech] is very slow. And it’s much more difficult for me, much more tiring.”

Christensen has seen “Still,” a documentary made by the actor Michael J. Fox about his own Parkinson’s journey. She thought it was good but, in her view, left some important things unsaid. She wanted to hear more from his wife, actor Tracy Pollan, and others around him.

“Probably since he’s a movie star, but it was all about him,” she said.

Christensen wants her documentary to address communication between people with Parkinson’s, their families, friends, and caregivers. She also wants to look at whether assistive devices and treatments are as accessible to people of color as they are for white people.

Christensen’s neurologist told her about Deacon Warner, a Minneapolis filmmaker who might be interested in making a film about Parkinson’s. Warner’s brother-in-law was diagnosed with Parkinson’s last year.

Warner is enthusiastic about the project. “I’m interested in storytelling that serves a purpose and engages people and tells stories that improve lives. This seemed like a really good opportunity to do something like that.”

Like most of the people around her, Warner is impressed with Christensen’s intelligence and determination.

“It’s really inspiring working with her,” he said. “She overcomes these challenges and is still making this all happen.”

Others who know Christensen make similar comments.

“Something that’s pretty cool about Jackie is just how motivated she is,” said Caitlin Ellenz, her speech therapist. “She knows that her disease is progressive, she knows that functions are going to continue to decline over time. She’s still fighting to be able to communicate. She’s just a very positive upbeat person making the most of her situation.”

Christensen complains that health care providers and others who don’t know her well sometimes talk to her husband rather than directly to her, when they’re both in the room.

“I just tell them, ‘Talk to her, and I don’t answer them and I look at her,’” Paul Christensen said. “I tell them her speech is very slow and quiet, but she’s sharper than either of us.”

It’s a phrase he uses often. And although he gets frustrated or tired of the endless grind of “having all these extra considerations in everyday life,” he remembers that it’s harder on her than it is on him.

“Part of why we are such a good team is that she is thoughtful and considerate,” he said. “We ask each other for help, and we respect that we’re not joined at the hip. We’re joined at the love.”

The spouses are very different, Jackie said. She likes to plan ahead (the AI-generated comments saved in her device for frequent use include “Paul, we’re going to be late,” Paul said); he likes to be spontaneous. She’s sentimental; he’s not.

“He is a firm believer in science, technology, and the physical world, whereas I have a strong spiritual side, a belief in things science can’t explain,” Jackie said. “Like the feeling that I was meant to make this documentary, and the bone-deep knowledge that Paul and I are supposed to be together. He agrees with me on that last point.”

Information about donating to the production of “Come Talk to Me,” a documentary Christensen and Warner are making about her Parkinson’s, is available on the project’s webpage.