Each minute, approximately 2.5 people are diagnosed with Parkinson’s Disease somewhere in the world. While most people associate Parkinson’s with tremors, stiffness, and balance issues, there’s another deeply distressing symptom that often goes unnoticed: persistent pain.
New research from the University of South Australia (UniSA) reveals that more than 65,000 Australians living with Parkinson’s experience chronic pain, yet many struggle to find effective relief. The studies, led by UniSA PhD candidate Anthony Mezzini and Parkinson’s nurse Dr. Sue Sharrad, highlight a critical gap in care: the lack of personalized, team-based, and caring support for managing pain.
The Pain Behind Parkinson’s
Pain in Parkinson’s isn’t just physical; it is emotional, isolating, and often overwhelming. It can affect muscles, joints, nerves, and even internal organs. For many, it overshadows the more visible motor symptoms and becomes the leading cause of reduced quality of life. UniSA’s research found that people with Parkinson’s often resort to trial-and-error to manage their pain. This is primarily due to a lack of access to specialist pain support and tailored clinical advice.
What Makes Pain Care Work?
The studies identified five key features that defined positive pain care experiences:
- Empathy and understanding
- Listening to needs and concerns
- Clear explanations
- Parkinson’s-specific knowledge
- Individualized treatment plans
When these elements were present, especially from Parkinson’s nurses and allied health professionals, patients reported significantly better outcomes. Unfortunately, these qualities were inconsistently applied across the healthcare system, with rural and regional areas facing the greatest challenges and access issues.
A Call for Compassionate, Coordinated Care
Dr. Sue Sharrad emphasizes the need to embed empathetic, personalized care into everyday clinical practice. Expanding access to Parkinson’s-trained nurses, physiotherapists, occupational therapists, and pain specialists could transform the way pain is managed.
“Pain isn’t just another symptom,” says Dr. Sharrad. “It’s a major factor that shapes how people live day to day. By making care more personal, coordinated, and compassionate, we can help people with Parkinson’s live fuller, more comfortable lives.”
Moving Forward
This research is part of UniSA’s broader mission to improve the lives of people with neurological conditions. The multidisciplinary team, including Mezzini, Sharrad, Prof. Saravana Kumar, Dr. Joanne Harmon, and Prof. Marion Eckert, is working to ensure that every person with Parkinson’s receives evidence-based, tailored pain care.
If you or someone you love is living with Parkinson’s, know that your pain matters. Advocacy, education, and compassionate care can pave the way to a better quality of life.