Palliative care & Parkinson’s: It’s about living well, not just dying well
An article written by Tina Gillespie, Content Strategist & Lived Experience Advocate, Parkinson’s Australia & YOPX
When my husband was finally diagnosed at 50 with Young Onset Parkinson’s, we were overwhelmed. We were told it was progressive and incurable, but no one mentioned palliative care, let alone how to assemble a care team. Those terms didn’t come up until much later, and by then, we were already navigating complex systems, fluctuating symptoms, emotional strain, and a future full of unknowns for our family of four.
From joining and then volunteering to coordinate the Young Onset 20s to 50s Support Group in South Australia, to signing the kids up as young carers, which allows them to access their own support group, and getting financial support through NDIS and the young carers bursary, my care partner journey eventually led me to a job with Parkinson’s Australia.
At Parkinson’s Australia, we worked with Palliative Care Australia to create the Palliative Care and Parkinson’s booklet. It’s a practical guide for people living with Parkinson’s, their families, and health professionals. It explains what palliative care looks like in the context of a long-term, complex condition, and why it matters.
So, what does palliative care look like for someone with Parkinson’s?
For people living with Parkinson’s, palliative care can, and ideally should, be part of the journey from the very beginning, starting at diagnosis. It’s about improving your family’s quality of life, managing symptoms with a multidisciplinary care team, and making sure everyone feels supported.
From movement to mood, vision, speech, sleep and gastrointestinal issues, there are over 40 possible Parkinson’s symptoms, so palliative care has got to be holistic and centred around the person's specific needs. It’s about managing pain, fatigue, and mobility issues. It’s about supporting mental health, navigating the changes to thinking and memory, and making sure communication remains clear and compassionate. It’s also about advance care planning, making sure to have those tough conversations early so that wishes about future treatments and care are known and respected later.
For care partners like me, it’s about being more informed from the start and therefore better equipped to advocate for our family and my husband.
That’s where the YOPX app comes in. Developed by and for people with Young Onset Parkinson’s, it’s a free digital tool that helps users track the impact of symptoms, access resources, and prepare for conversations with health professionals. It includes modules on employment, relationships, mental wellbeing, care partners, NDIS and yes, we talk about palliative care.
If you’re living with Parkinson’s, or caring for someone who is, I encourage you to explore the resources below. Start the conversations with your family and care team. Ask smart people dumb questions. And remember, you don’t have to wait until things get “bad” to ask for palliative care. It’s there to help you live better, not just longer.
- Palliative care info hub page – Parkinson’s Australia: https://www.parkinsons.org.au/information-hub/palliative-care/
- I am a carer page – Parkinson’s Australia: https://www.parkinsons.org.au/i-am-a-carer/
- I have Parkinson’s page – Parkinson’s Australia: https://www.parkinsons.org.au/i-have-parkinsons/
Author
Tina Gillespie
Content Strategist & Lived Experience Advocate
Parkinson’s Australia & Young Onset Parkinson’s Exchange (YOPX)