What does it mean to truly live with Parkinson’s disease, not just manage it, but live? For Sister Phyllis Supancheck, a physical therapist (PT), educator, missionary, and self-described “Super Chick,” the answer involves mule rides in the mountains of Peru, Bible correspondence courses with prisoners, a receptionist desk at an assisted living facility, and a love of plants.
Sister Phyllis joined host Beth Peterson on LSVT Global’s Think BIG and LOUD podcast to share her remarkable journey — one that spans decades, continents, and more than a few medical setbacks, and to offer hard-won wisdom to others living with Parkinson’s and the clinicians who care for them.
A Life Spent in Service
Before Parkinson’s ever entered the picture, Sister Phyllis built a career that defied easy description. Armed with degrees in physical therapy and education, and later a doctorate in special education, she worked with children with disabilities in Chicago, New Mexico, and across Central America and Southeast Asia — including Peru, Honduras, Guatemala, and Thailand.
Her time in the missions was nothing if not adventurous.
It was back in Chicago, amid the snow and the daily grind, that she first noticed something was wrong. She kept falling and couldn’t figure out why. “I thought, well, maybe it’s the snow. So I kind of put it aside.”
The Long Road to Diagnosis
When she returned to Grand Rapids, Michigan, the falls continued, and her hands began to tremor. A neurologist diagnosed her with essential tremor. What followed was a grueling sequence of deep brain stimulation (DBS) surgeries: three in total. The first two became infected and had to be removed entirely. Before the third, she made herself a promise. “I said, that’s the end — if it doesn’t work, too bad.”
It worked. But the journey wasn’t over. In 2019, after continued difficulties with gait and balance, her doctors arrived at a new diagnosis: Parkinson’s disease. She believes the essential tremor diagnosis may have been a misread all along.
The DBS, while effective for her tremor, came with a significant trade-off.
Discovering LSVT BIG® — and Finding It Works
Always a researcher at heart, Sister Phyllis sought out evidence-based exercise programs after her Parkinson’s diagnosis. She came across LSVT BIG, an intensive physical and occupational therapy program developed specifically for Parkinson’s, and pushed her neurologist to refer her.
The results were meaningful. Her walking improved. Her balance improved. And she noticed changes in the everyday moments that matter most.
She also found that she could continue watering her beloved houseplants. “I have to reach up and water them from above. That is something I’ve functionally been able to do.”
Writing, once something she did beautifully in calligraphy, also improved with occupational therapy follow-up. After completing the initial 16-week program, she knew she needed more. “I decided that I need that for life. I need to keep doing this. And I need a group, because I’m not very good at doing exercise by myself. I’m a PT, but I hate to exercise — sounds funny, doesn’t it?”
She now participates in BIG for LIFE twice a week. The group, she says, makes all the difference.
On LSVT LOUD® and the Ongoing Work of Being Heard
Sister Phyllis also participated in LSVT LOUD, the companion speech therapy program. While she was candid that the gains were more modest — in part, she believes, because of the DBS settings required to control her tremor, she recognized the value in what it gave her.
She acknowledged that she would like to do more: “I feel that I have nothing to lose.” Host Beth Peterson, herself a speech-language pathologist, encouraged Sister Phyllis to consider both a tune-up session and LOUD for LIFE, particularly as she recently got her hearing aids repaired, which could help her better monitor and calibrate her own voice during practice. “When I listen to myself, it’s not the same as I used to be. That’s the difficult part.”
What She Wants Clinicians to Know
Asked what she would tell physical therapists, speech-language pathologists, and occupational therapists about working with people with Parkinson’s, her answer was immediate.
She shared that when she told her physical therapist she could no longer write legibly, a painful loss for someone who had once done beautiful calligraphy, they listened and referred her to an occupational therapist who helped her with fine motor skills. That responsiveness mattered.
She also emphasized the value of cognitive challenges woven into physical therapy. “The PTs working on BIG include cognitive stuff, and that is very helpful. So that those of us who still need to be challenged in thinking can do that while we’re working on articulation, while we’re working on being loud enough.” Counting backward, or by fours — “let me tell you, that is hard” — is exactly the kind of dual-tasking she values.
Living Fully, Not Fearfully
Sister Phyllis is clear-eyed about what Parkinson’s progression may bring. She knows the disease is progressive. She knows hallucinations and dementia are possibilities. “None of that has happened yet, thank goodness, but it’s a possibility.”
Her response to that reality is not denial but engagement. She participates in research projects. She has agreed to donate her brain to science. She took part in a speech accessibility study alongside Microsoft, Apple, and other companies working to help voice-recognition technology better understand people with Parkinson’s, stroke, Down syndrome, and other conditions.
She stays connected. She participates in a Parkinson’s pen-pal network through the Michigan Parkinson’s Association. She plans to join a Parkinson’s walk in Grand Rapids, either as a volunteer or a participant. And she still does her Bible correspondence course with prisoners.
When asked how she stays so positive, how she avoids the pull toward withdrawal that Parkinson’s can invite, her answer was simple. “I haven’t had any time to get depressed, that’s for sure. You can say ‘poor me’ and go into that kind of a mode. But the more that you can stay engaged with other people and participate in activities, the better off you’re going to be as a person with Parkinson’s. It’s easy to just retire, to fall back, and do nothing. I’ve seen that happen. I’ve seen people do that, and it just discourages me.”
“I can’t live like that. I have to live a full life. And I’ve decided that’s what I’m going to do.”
Sister Phyllis Supancheck was a guest on the Think BIG and LOUD podcast, produced by LSVT Global. Listen to the full episode of Think BIG and LOUD wherever you get your podcasts.
AI (Claude) assisted in the translation of this content from a podcast to a blog, edited by humans of course.