Release comes for Lakeland woman whose optimism in coping with ALS inspired many

Faced with perhaps the cruelest of medical plights, Laura Pinner became an inspiration for friends and strangers as she radiated gratitude, positivity and courage in the time that remained of her life.

The Lakeland resident also spoke honestly about the physical suffering and emotional distress wrought by the unrelenting decline of her body from amyotrophic lateral sclerosis, or ALS. The brutal disease brought an end to Pinner’s self-declared “wonderful life” on Friday. She was 53.

Pinner died at the childhood home in South Lakeland that she shared with her parents, Bill and Frances Pinner, enveloped by family members and friends. She had been under sedation and unconscious for several days before her passing, said her older sister, June Edwards.

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The Ledger chronicled Pinner’s experience with ALS, sometimes called Lou Gehrig’s disease, in an article in November 2021 and an update in February. She spoke honestly about how the disease had ravaged her body while emphasizing the deep meaning her life still held.

“I'm totally, 1,000% thankful,” Pinner said in November 2021, when she had already lost the ability to walk and the use of her left arm. “My cup runneth over.”

ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. It blocks the brain’s ability to control muscle movement, and patients eventually lose the ability to speak, eat and finally to breathe.

As her condition worsened, Pinner relished visits to her home from her wide network of friends, including some from her days as an aspiring actress in Los Angeles. Locally, she counted Lakeland Mayor Bill Mutz, his wife, Pam, and their daughter, Emma, among her close friends.

Bill and Pam Mutz said Pinner and Emma — who has Down syndrome — became pals as fellow choir members at Grace City Church. Emma, 24, called Pinner “Lala.”

“Laura is somebody who knew how to live life fully and embrace friendships broadly,” Bill Mutz said Friday afternoon. “And she was vivacious about any activity in which she engaged. And so, I think most people, when they think of Laura, that have been close friends with her over time, think of her as someone that just always made people smile when she walked in the room.”

Born in Lakeland, the extroverted Pinner was a cheerleader at Kathleen High School before attending the University of Florida. She remained a devout Gators fan long after departing Gainesville.

Pinner competed in pageants in young adulthood, such as the Miss Florida Citrus Pageant, and she regularly won Miss Congeniality titles. Heeding a friend’s suggestion, she began seeking roles in TV commercials, and she gained a role as an extra in “The Waterboy,” the 1998 Adam Sandler movie shot partly in Lakeland.

That experience prompted Pinner to take a gamble, moving to Los Angeles in 1999 to pursue acting roles in movies and TV shows. A blonde with a wholesome look, she never played a lead role but had small parts and featured extra roles in such movies as “Wedding Crashers” and "Constantine." Years later, she gushed about working beside the likes of Keanu Reeves and Forest Whitaker and meeting Matthew McConaughey at a party.

In the early 2000s, Pinner began working as a traveling demonstrator for Subaru at major auto shows. Returning to Florida, she became a model for HSN (formerly Home Shopping Network), based in St. Petersburg.

Early indications of her disease occurred on the HSN set, as Pinner had trouble with her balance and began struggling with the buttons and snaps on costumes. She also noticed wave-like pulses in certain muscles and then numbness in her left foot.

Bill and Pam Mutz mentioned a troubling incident that occurred well before Pinner’s diagnosis. She was sitting on a stool during a visit to their home and suddenly lost control and slid to the floor.

A neurologist at the University of South Florida gave Pinner the diagnosis of ALS in March 2021.

“I was in such denial about it because, I mean, I've never had anything like this before,” Pinner said in November 2021. “It's hard to believe that it's happening to you.”

There is no known cure for ALS, and treatments have shown limited effectiveness. The mean survival period for people with the disease is two to five years, according to the ALS Association, though some live for 10 years or even longer.

Within months of her diagnosis, Pinner required professional care at home. She began using a powered wheelchair, controlling it with a knob as she retained some use of her right hand. She relied on her iPhone to communicate with friends by calls and dictated text messages.

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Pinner often used the phrase “both/and” in describing her grappling with ALS. She found comfort in her Christian faith and her expectation of being freed to a better realm in death.

“This whole disease thing — it’s awful and beautiful, all at the same time,” she said in 2021. “ALS is not fun. It has robbed me of walking and working, but yet there are gifts within it. It's a gift because it really makes me treasure every morsel of time that I have with my family, my friends. I look at nature differently. I covet more time on Earth. It's given me a perspective of just knowing there has to be something bigger and greater beyond for all of us.”

Pam Mutz said she had “great conversations” with Pinner as she grappled with the reality of her condition.

“Some of the harder conversations, as we would visit her in her bed, and she's like, ‘I just still, God, I just want to live so much life. I just don't understand,’” Pam said. “And I'm like, ‘I know, Laura. These are some of the tough things. It's a sin-cursed world we live in, and I am so sorry.’”

Pam Mutz hired a photographer to capture images and videos of Pinner over the course of her transition through ALS. She planned to give the images to the Pinner family.

While she was still able to ride in a customized van, Pinner would go on “dates” with Emma Mutz. Pam said that when she told her daughter about Pinner’s death Friday afternoon, she responded, “That hurts my heart.”

While remaining hopeful, Pinner acknowledged the disease’s physical and mental toll. The muscle decline brought nerve damage, which she said “makes my legs feel like petrified bark and my legs are about to fall off.”

She added: “I just want people to know about this disease, that literally, it takes out the patient. It takes out people. It’s a lot — a lot of grief and loss, juxtaposed with a lot of joy and hope.”

A close friend, Stan Fenton of Bartow, kept in touch with Pinner through daily phone calls or visits.

“She's very fortunate to have both a strong faith and a good support network,” he said in 2021. “But, yeah, it's been difficult watching it take her independence, or her mobility. She’s always been a very strong and independent woman. And I know that this puts her in a spot of vulnerability. And I mean, the outcome is as awful; the end result is awful. And I think she faces every day with courage and dignity and beauty. And it's been kind of inspiring to see someone face adversity and face it headlong and positive, as she has.”

Gary White can be reached at gary.white@theledger.com or 863-802-7518. Follow on Twitter @garywhite13.

This article originally appeared on The Ledger: Lakeland woman whose optimism amid ALS fight inspired many dies at 53