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Documentary Faces the Reality of Lewy Body Dementia

Three couples navigate the profound challenges of dementia — sharing strength, love and courage — in 'Facing the Wind'

By Paul Wynn

Soprano Renée Fleming, cellist Yo-Yo Ma and actor David Hyde Pierce share more than their notable careers; they are also co-executive producers of "Facing the Wind," a new documentary spotlighting Lewy body dementia. The film, streaming here, follows three couples as they face the intense challenges of this form of dementia, testing their vows of enduring love and commitment through "sickness and in health."

A still from Facing the Wind Documentary. Next Avenue, dementia, alzheimer's
Facing the Wind began filming in December 2021, focusing on three couples: Curry and Linda Whisenhunt, Patrick and Carla Preyer and Jim and Linda Szypula. The story centers on the male patients living with Lewy body dementia and their wives, who are their primary caregivers.  |  Credit: Facing The Wind

Lewy body dementia impacts cognition, movement and behavior. Symptoms often include memory problems, confusion, tremors, muscle stiffness, slow movement, hallucinations, paranoia, depression, anxiety, sleep disturbances and fluctuations. Lewy body dementia, the second most common form of progressive dementia, affects more than 1.4 million Americans, but is still not widely known and understood, explains Mary Lou Falcone, co-executive producer of the 60-minute documentary.

"Seeing real people in real life is the most dramatic and powerful way to better understand the disease."

"Seeing real people in real life is the most dramatic and powerful way to better understand the disease and see how differently it impacts individuals and their families," says Falcone, author of "I Didn't See it Coming," a memoir about her falling in love with her husband, Nicky Zann, and caring for him through his journey with Lewy body dementia.

Hyde Pierce was so inspired by the couple's courage, strength and love during their experience together that he became a co-executive producer of the documentary along with Fleming and Ma. "I hope families who are dealing with Lewy body and other dementias will see the film, and I hope families who haven't been touched by dementia will find understanding and compassion and be inspired by the heroes in the film to join the cause," says Hyde Pierce, who has lost family and friends to Alzheimer's disease and vascular dementia.

Following the Journey

The documentary team began filming in December 2021 with a focus on three couples: Curry and Linda Whisenhunt, Patrick and Carla Preyer and Jim and Linda Szypula. The story centers on the male patients living with Lewy body dementia and their wives, who are their primary caregivers.

Of the three men, Curry has been living with Lewy body dementia the longest, for more than a decade, and is considered an outlier. The average life expectancy for someone diagnosed with Lewy body dementia is typically five to eight years after diagnosis. Curry, who has responded well to medications to stabilize his mood and hallucinations, facilitates a patient support group and started chronicling his life on Facebook. He later teamed up with Linda Szypula to produce a national podcast called the "Lewy Body Roller Coaster."

The documentary follows the Szypulas as they embark on a road trip in their RV, traveling from New Jersey to visit families affected by Lewy body dementia. "The road trip felt like a wonderful last adventure for Jim and Linda to enjoy the time they had left," says Deirdre Fishel, director of "Facing the Wind" and professor of film and video production at City College of New York. "Jim was at that point where he really knew that his disease was progressing and he was struggling."

"Through the hospital, we were able get tests done, including a PET scan, which showed the Lewy body tangles in his brain. The diagnosis came as a relief and a shock."

After 1,800 miles, they reached Curry's house in Castroville, Texas, where they spent a few days getting to know each other. After visiting Curry, it was obvious that being on the road, without a routine and poor sleep, was taking its toll on Jim. Linda decided that it was time to turn around even though that meant not seeing Patrick and Carla in Sacramento.

Six months after the road trip, Jim unexpectedly passed away, leaving everyone in shock, including his family and the other couples featured in the documentary. Patrick follows, dying just four months later with Carla by his side holding his hand.

"Both Jim and Patrick passed away suddenly, which can happen with Lewy body dementia," Fishel says. "Their deaths were shocking, as we had plans to visit them shortly before it happened, but the decline was rapid and unexpected. It wasn't a conscious choice not to show their final stages."

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Finding Support

The documentary includes scenes from Patrick and Carla's wedding in 2001, which occurred 10 months after they met on a blind date. Patrick, an operating room nurse, started experiencing symptoms in 2012 that included hand tremors and fainting episodes. Later, he would forget what tools he needed to provide the surgeons during an operation. He retired from his nursing career in 2014.

"Through the hospital, we were able get tests done, including a PET scan, which showed the Lewy body tangles in his brain," Carla remembers. "The diagnosis came as a relief and a shock."

A still from Facing the Wind Documentary. Next Avenue, dementia, alzheimer's
Carla Preyer with her husband, Patrick.  |  Credit: Facing The Wind

Carla found the Lewy Body Support Group for Spouses group on Facebook to educate herself about the disease. She and a few of the other caregiver wives migrated to a weekly Zoom call. Eventually, the wives planned a memorable respite care weekend in Kansas City, Missouri, filled with laughter, tears and lasting friendships, all captured in the documentary.

With help from the other wives, Carla developed strong coping skills to manage the challenges of caring for Patrick, especially as his condition progressed. She often used humor to lighten difficult moments, sharing funny stories at the end of support group meetings, which helped her and others cope with the heaviness of their situations.

When dealing with hallucinations, Carla learned to step into Patrick's world by agreeing with his perceptions, even if they weren't real, and then gently redirecting the conversation. This approach helped avoid confrontation and reduced his anxiety. For example, when Patrick thought he saw a truck in the backyard, Carla played along, making light of the situation and shifting the focus to something else. "I realized that this was part of his condition and so I tried not to overreact to things," she says.

A still from Facing the Wind Documentary. Next Avenue, dementia, alzheimer's

In dealing with paranoia, Carla remained calm and supportive. Although Patrick's suspicion and paranoia worsened over time, she was grateful that he never experienced delusions about her being unfaithful, which can be a common issue for many caregivers. When he had auditory hallucinations, she would engage with the voices, even "kicking them out" with her assertive personality, making the situation feel less threatening.

In one of the last scenes, about a year after their husbands have died, Carla and Linda reunite in New Jersey at the Wildwood boardwalk where Linda and Jim met as teenagers working at Morey's Pier, known for its rollercoasters. They carve their husband's names into the sand and consider their futures – Carla to focus on self-care for caregivers and Linda, partnering with Curry to co-host the podcast.

"I have no regrets about the film team following our lives, and documenting the challenges that we faced," Carla says. "By sharing our story, we can inspire others affected by dementia to open up, and that's where real change can begin."

How to watch: Stream "Facing the Wind" anytime with Vimeo on Demand or stream for free March 3 with AARP's "Movies for Grownups."

Paul Wynn
Paul Wynn has contributed feature and news stories to more than 65 publications throughout his career. He is a graduate of Ithaca College's Park School of Communications. He lives with his family in New York's scenic Hudson Valley. Read More
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