Receiving a Parkinson’s diagnosis can feel overwhelming and life changing. For many patients, hearing that it is a progressive disorder brings fear, discouragement, and a sense of hopelessness. In my experience working with individuals living with Parkinson’s disease, I have seen how easy it is for people to believe there is nothing they can do to improve their quality of life. But I have also witnessed something incredibly powerful hope restored through action.
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In recognition of ASHA’s National Speech Language Hearing Month, we sat down with Jen Walentas Lewon — clinical associate professor, LSVT LOUD practitioner, and self-described “consumer of voices” — to talk about what it means to do this work well.
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When you or someone you love is diagnosed with Parkinson’s disease, the search for help begins immediately. You talk to other people with Parkinson’s. You join support groups. You ask your neurologist. You search online. And over time, a list of recommendations begins to take shape including exercise programs, speech therapy, physical therapy, occupational therapy, nutrition, medications, and more.
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Many clinicians have long suspected there’s a relationship between feeding, swallowing, and speech–language development. This post isn’t about fully explaining that relationship. It’s about why it matters clinically and why it’s worth paying attention to.
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When Gary Rogliano received his Parkinson’s disease diagnosis in mid-2018, he found himself in unfamiliar territory. “I’ve never heard of Parkinson’s before that,” he recalled on a recent episode of LSVT Global’s Think BIG and LOUD podcast. “Had no idea where to go, who to talk to or anything.” What followed wasn’t a retreat into uncertainty — it was the beginning of a movement.
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One year ago, Sean Bulanda was taking roughly 300 steps a day — mostly between the couch and the bathroom. Today, he’s a stand-up comedian, a songwriter, a certified LSVT Big physical therapist, and the founder of a 2,200-member Parkinson’s support group. This is the story of what happened in between.
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When LSVT BIG first emerged as a rehabilitation protocol for Parkinson’s disease, its core insight was deceptively simple: train the nervous system to move bigger, and daily function follows. The intensive, amplitude-focused program, sixteen one-hour sessions over four weeks, works by retraining sensory perception alongside motor output, helping patients recognize that movements which feel exaggerated are, in fact, simply normal. That principle, it turns out, may travel well beyond Parkinson’s disease.
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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.
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What does a registered dietitian do when she discovers she has young onset Parkinson’s? She turns her diagnosis into a mission — building the tools and programs she wished had existed for herself and the thousands of others navigating the same uncertain road.
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What happens when a man loses his voice to Parkinson’s disease — and responds by making an album with some of Britain’s greatest musicians? For Ian Grant, Paul Mitchell, and John Caulcutt, the answer is Think Loud 4 Parkinson’s: a limited-edition vinyl and CD collection that brings together legends from The Stranglers, Fairport Convention, Big Country, the Sex Pistols, and more, all in service of finding a cure.
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