We’re here to walk alongside you, every step of the way.

Parkinson’s may change some things, but it doesn’t define who you are. With the right support, knowledge, and care, you can continue to live a meaningful, active life.

Just diagnosed with Parkinson’s? Here’s what to do next…

Hearing the words “You have Parkinson’s” can be life-changing. You might feel shocked, confused, or even relieved to finally have an explanation for the changes you’ve been noticing. Whatever you’re feeling, just know this: you are not alone, and there is support available to help you live well with Parkinson’s.

At Parkinson’s Australia, we’re here to guide you through the next steps, connect you with trusted information, and help you build a plan that works for you.

What should I do first?

After a diagnosis, it’s important to take a moment to breathe. Parkinson’s is a progressive, neurological condition, but many people live full, active lives for years after diagnosis. The key is to act early, stay informed, and build a strong support team. Here’s what we recommend:

  1. Start building your care team: Your GP is your first point of contact, but you’ll also benefit from seeing a neurologist (ideally one who specialises in movement disorders), a physiotherapist, occupational therapist, speech pathologist, and mental health professional. Ask your GP about a Chronic Disease Management Plan or Mental Health Plan to access subsidised care. See more about care teams.
  2. Learn about Parkinson’s: Understanding your condition helps you make informed choices. Visit our Understanding Parkinson’s page to learn how Parkinson’s affects the brain and body, and what symptoms to expect.
  3. Read over the Parkinson’s medications page: Don’t worry if it takes a while to optimise your medications. Brain chemistry is complicated and everyone is different in their responses to their medications. Meds are best taken on an empty stomach with a full glass of water, and avoid protein 30 mins minimum either side of a dose as it competes with levodopa to get up to the brain first.
  4. Download our Live Well booklet: Follow our top ten tips to live well with Parkinson’s.
  5. Explore the Information Hub: Our Information Hub includes downloadable infosheets, videos (also on our YouTube channel @ParkinsonsAus), and links to services that can help you manage symptoms, stay active, and plan for the future. Just search up the topic you are looking for and we should have an answer for you. If we don’t, please get in touch and we will do our best to fill that gap ASAP.
  6. Apply for support early:
    1. If you’re under 65, you may be eligible for the NDIS (National Disability Insurance Scheme). We recommend applying as soon as possible. Visit our NDIS support page and check out the Young Onset Parkinson’s Exchange (YOPX) for extra tools and tips.
    2. If you’re 65 or older, My Aged Care can help you access support services. See the Navigating Aged Care infosheet.
    3. Carers and young carers be sure to register with the Carer Gateway to also get the support you need.

Living well starts now

Parkinson’s is different for everyone. Some people experience mostly physical symptoms, while others may notice changes in mood, sleep, or digestion. That’s why we encourage a whole-person approach to care.

Here are five simple things you can do today:

  1. ‍Get moving because exercise is the best thing you can do to slow progression, help medication uptake, and more…
  2. Eat well because a balanced diet supports brain and gut health.
  3. Stay connected because social interaction not only boosts mood and reduces isolation, but also is just as important to wellbeing as regular exercise.
  4. Sleep well because good sleep helps your body and brain recover.
  5. Ask for help because whether it’s a neighbour, social worker, counsellor, or Parkinson’s Nurse, you and your family don’t have to do this alone.
live well booklet (pdf)

Key Statistics

  1. There’s no single test for Parkinson’s.
    Diagnosis is based on clinical signs like tremor, stiffness, and slowness of movement. Your doctor may also look at collecting information on your medical history including non-motor symptoms like sleep issues, constipation, or loss of smell. Learn more about biomarkers here.
  2. It often starts subtly.
    Early signs may include smaller handwriting, a softer voice, or changes in mood. These can be easy to miss or misattribute to ageing.
  3. It’s usually diagnosed by a neurologist.
    A GP may refer you to a specialist for a full neurological exam. In some cases, brain imaging (to rule things out) or medication trials (like levodopa) may help point towards a diagnosis.
  4. Young Onset Parkinson’s is more common than you think.
    Around 1 in 5 Australians with Parkinson’s were diagnosed before age 50. If this is you, find out more about the YOPX website and app for tailored support.

Explore More Resources

  • Digital Health Toolkit – Learn how to use My Health Record, the my health app, and e-scripts to manage your care.
  • Downloadable Info Sheets – Easy-to-read guides on symptoms, treatments, and daily living.
  • YOPX App & Website – For people diagnosed under 65, their carers, allied health professionals and NDIS staff… with tools to help plan your goals, apply for NDIS, and heaps of information, tips and articles tailored to your age/stage in life.
  • Parkinson’s MOOC  (online course) – The Parkinson’s MOOC has been designed to be accessible to and informative for everyone, including people with Parkinson’s and their support networks, medical and allied health professionals and the wider global community.

Infosheet under review

References 

  • Mellick, G. (2024). Ecosystem of Parkinson’s in Australia. Parkinson’s Australia.
  • Waller, C., et al. (2021). The initial diagnosis and management of Parkinson’s disease. Australian Journal of General Practice, 50(11), 793–800.
  • Armstrong, M. J., & Okun, M. S. (2020). Diagnosis and treatment of Parkinson disease: A review. JAMA, 323(6), 548–560.
  • Chaudhuri, K. R., & Schapira, A. H. V. (2009). Non-motor symptoms of Parkinson’s disease: Diagnosis and management. The Lancet Neurology, 8(5), 464–474.
Happy middle aged man with neat white beard and glasses looking at a laptop

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Your donation helps us to achieve our core business, to improve the lives of people affected by Parkinson’s in Australia through national advocacy, raising awareness and connecting people living with Parkinson’s, their families and carers, researchers and health professionals in the Parkinson’s community.