Community pillar Tricia Denton faces challenges of her own

Denton’s “local” beach is Shalda Creek, a mile from her home. The photo shows her visiting there with family on her birthday 13 years ago. “I now can barely access the water unless I crawl,” she said.

By Berry Kendall

Sun contributor

Imagine putting in the interminable work required to face down alcoholism and maintain your sobriety for 30 years. Through that journey, you mentor dozens of other women in the throes of their own addiction recovery. Now imagine your world is rocked by a rare neurodegenerative disease called Primary Lateral Sclerosis (PLS) that, among other cruel symptoms, causes your speech to slur. Acquaintances unaware of this development whisper to each other maybe she’s relapsed? On one occasion, you experience car trouble and upon hearing you speak, the kind individuals who stop to render aid ask you if you’re driving drunk.

Most people would feel justified in reacting with anger or indignation but not Tricia Denton of Maple City. “I just found it humorous. We always have the opportunity to turn those situations into teaching and awareness opportunities,” she says with remarkable grace. “The hallmark of how I try to operate in the world is I take a deep breath and pose a question to myself: What must it be like for that person to have made a negative assumption? I don’t take it on or take it personally. I try to assume that people have a positive intent.”

PLS is characterized by the Cleveland Clinic as a progressive neuromuscular condition that causes muscle weakness, stiffness and spasms throughout the body, balance, speech and swallowing problems and compromised breathing. While there is no cure, its symptoms can be managed with treatment and mobility support. PLS can present symptoms similar to other neurological diseases such as multiple sclerosis and ALS, therefore making it difficult to diagnose. Its progression is much slower than ALS, and with proper treatment and assistive devices, patients can have a normal lifespan.

That said, most of the therapies, experimental treatments and assistive devices are not covered by insurance and do not come cheaply. Denton has traveled to Ann Arbor three times in the last 18 months to undertake an experimental therapy at the University of Michigan. In an effort to assist her speech and swallowing, specialists inject her soft palette with hyaluronic acid, creating a reaction that allows the muscles she has control of to seal her soft palette. Denton says, “For the injection, they send a camera and the needle up through my nose and down my throat.” She adds, “And I’m awake for this fun.” A sealed soft palette is critical for speaking audibly, maintaining the pressure needed for swallowing and keeping liquids in the mouth until they are ready to be swallowed. An inability to do so puts one at risk for aspiration into the lungs.

By her side for the experimental treatments is her husband, Shawn, who also serves as her driver. Married for 27 years, they first met in geography class at Michigan State University in 1991. Undeterred by the fact she was dating someone else, Shawn confided in both his dad and his best friend that he’d met the woman he was going to marry. Upon graduation, she ventured to Montana for graduate school. “When I ended that relationship in 1995, I tracked down Shawn and asked him on a date,” Denton says. “He borrowed money from a friend to fly out from Michigan to see me and the rest is history.”  Fluent in Japanese, Shawn is a home builder and the owner of Sakura Builders. “Sakura is Japanese for cherry blossom, an homage to our region’s role in the cherry industry and his love of Japanese design,” Denton explains. Together, the couple has three children: Cecelia, 23, a graduate of The Leelanau School; Thomas, 16, a current Leelanau School pupil; and Ursella, 14, a student at Leland Public School.

Not just known by many in the county, Denton is beloved and revered as a tireless community leader and loyal, giving friend. Her work and volunteer efforts span several organizations: the Michigan Association for Infant Mental Health, Samaritans’ Closet, The League of Women Voters for Leelanau County, Michigan and Lake Michigan Region, The Leelanau School, 4-H, Substance Free Leelanau, Benzie/Leelanau District Health Department, Poverty Reduction Initiative, Leelanau Clean Water, and Oil and Water Don’t Mix. Just over a year ago, her worsening PLS symptoms forced Denton to retire from her job at the Glen Lake Association, a non-profit organization. In February, Denton was celebrated at a retirement party of sorts at the Little Traverse Inn where more than 100 people showed up to rally around her.

Obtaining her PLS diagnosis was an exercise in dogged perseverance. In February 2020, mere weeks before the U.S. was plunged into the global pandemic, Tricia was involved in a head-on car collision. “I was checked out at Munson and they didn’t detect anything and then I wasn’t able to do any follow up or any treatment because nobody could see a doctor. So almost a year later, when different weird symptoms started showing up, I and others attributed them to a brain injury,” she says. In her quest to get answers, Denton was kicked around from specialist to specialist. With doctors still suspecting a brain injury, she spent countless hours doing speech and swallow therapies in addition to physical therapy for her feet and balance. “The neurologist would ask me to walk across the room and then pronounce, ‘I don’t see anything wrong’.” Denton would then try to explain, “Yes, but I’m having to tell my right leg to move faster than my left.”

Denton spoke about feeling betrayed by her body. “I used to be able to rock the balance poses in yoga like no one else. I was trained in ballet and tap dance. I was always very aware of where my body was in space. To suddenly have such a profound loss of control, to get up from being seated and try to take a step and then stumble like I’m about to pass out drunk…I was trying to power through when I had no idea what was going on.”

Having depleted every medical treatment in the area, Denton was finally referred to the specialty group on neuromuscular diseases at the University of Michigan. Soon after, she aspirated on her saliva while sleeping, an alarming catalyst which helped her finally receive the accurate diagnosis of PLS. Last year, a muscle spasm resulted in a fall. Denton sustained a fractured femoral head which required surgery and a two-and-half week hospital stay.

Asked about the emotional toll PLS has taken on her family, Denton grows quiet. “How do you go from having this almost superhero mom who does everything for everybody, who’s smart and capable and there for you too, and then have her kind of disappearing before your eyes? When your primary caregiver can’t meet your needs, it sets off survival level panic, no matter how old we are. I’m dealing with that myself: my own mom has early onset Alzheimer’s. It rocks you to the core. I no longer wait for perfect timing. Just give me good timing. We never know what’s going to happen.”

She continues, “I tell my kids that I’m so glad we did get to go backcountry camping and skiing and backpacking together. We had all kinds of outdoor physical adventures. And yeah, there are a lot of things that I can’t do anymore. There will be more things I can’t do in the future. But I’m still me. And I will always be here for you.”

A joyous activity that Denton has also found therapeutic is her decade-long involvement with the Leelanau Community Choir. “It was a bucket list item for me. I always wanted to sing as a kid so I told myself that someday I’m going to join a choir and see if I could sing. And I could! Turns out I was actually good and had the widest vocal range in the choir. I could sing alto, tenor or baritone, so I went wherever they needed me,” she explains. Although PLS has compromised her vocal abilities, Denton is still an active participant. “It’s excellent therapy to sing with people once a week and perform concerts,” she says. “I embrace the changes in my voice with humility and with gratitude that I still have a voice and can sing, even if I sound terrible. I can bring a sense of joy to the choir even if I can’t hit the high notes anymore!”

Some recent good news is that Denton’s soft palette injections are holding steady. Her next plan of attack is starting drops, which will reduce her saliva, coupled with virtual vocal therapy with an expert at University of Michigan. “Someday in the future I may need a special keyboard that tracks my eye movements in order to talk or a different kind of bed. In addition to my therapies and assistive devices, we have our regular household expenses just like anyone else. We need to make our monthly mortgage payment. Our family of five shares one car. Our boiler is cracked so we need a new one. That’s why it’s important to get the additional financial support that I need for my PLS treatment.”

Being on the receiving end of altruism is an adjustment for Denton. “As humans, we have a need to give much more than a need to receive. I’ve always been a helper and now I need to practice what I preach. If I have a legacy, it’s showing people that community is always what’s needed. Whether it’s overcoming and living with the disease of addiction or Primary Lateral Sclerosis or facing our challenges to our children, our elders, or our environment – community is where it’s at. I’ve moved 32 times in my life which has given me a real awareness of the importance of community. Being on the peninsula, we have an island culture here. We need each other and we need to be there for each other. We’re all in this together.”

As of May 6, more than $15,500 of a $60,000 fundraising goal had been reached. If you’d like to support Tricia Denton, visit GoFundMe.com/f/stand-with-tricia-denton-in-her-time-of-need.