Pain, not just tremors, is a daily reality for many Australians living with Parkinson’s. Every 27 minutes another person in the country is diagnosed, and along with movement and balance problems, persistent pain adds a heavy, often unseen burden.
New research from the University of South Australia highlights how widespread and challenging this pain is for people with Parkinson’s, and it calls for more individualized, multidisciplinary, and empathetic care.
Two studies explored how people with Parkinson’s manage pain and what they experience with pain care services. The findings point to significant gaps in support. Many patients rely on trial-and-error methods to control pain, not because they prefer it, but because access to specialized pain care or tailored guidance is limited.
When pain care succeeds, it tends to be because clinicians—especially allied health professionals and Parkinson’s nurses—take time to listen, understand, and customize treatment to the person’s unique situation.
The research identifies five core factors that shape people’s experiences of pain care: empathy and understanding, listening to needs and concerns, clear explanations, Parkinson’s-specific knowledge, and individualized treatment plans.
These elements matter, but they are not consistently present across the health system. Patients report mixed feedback from general practitioners and neurologists, and rural and regional areas face greater barriers to accessing appropriate care.
Lead researcher and UniSA PhD candidate Anthony Mezzini emphasizes the scale of the challenge. Pain is a prevalent and debilitating non-motor symptom of Parkinson’s. It is one of the most troublesome issues in early-stage Parkinson’s and a major driver of reduced quality of life. Patients describe pain management as a trial until a more personalized approach is found, underscoring the need for expanded access to specialist pain support and tailored advice.
Dr Sue Sharrad, UniSA’s Parkinson’s Nurse and a key member of the research team, argues for systemic changes. “Embedding empathetic, individualized care into routine practice—and expanding access to Parkinson’s nurses and allied health professionals—could make a real difference.”
She notes that Parkinson’s specialist nurses and allied health professionals are often praised for their high level of care, yet many patients still do not receive pain care that is truly tailored and evidence-based. The aim is to ensure every person with Parkinson’s gets care that recognizes the condition’s complexity and addresses pain as a central quality-of-life issue.
The researchers describe a path forward that combines broader multidisciplinary access with stronger training for health care providers. By weaving empathetic, patient-centered approaches into everyday practice and increasing the availability of Parkinson’s-specific expertise, clinicians can deliver care that is not only scientifically sound but also compassionate and practical for daily living.
This work is part of UniSA’s broader effort to improve life for people with neurological conditions. The research team includes Anthony Mezzini, Professor Saravana Kumar, Dr Sue Sharrad, Dr Joanne Harmon, and Professor Marion Eckert. Their findings advocate for a health system that treats pain as a core component of Parkinson’s care, a move many patients say is long overdue.
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