A Parkinson’s diagnosis can be something different to each person. It’s confronting, overwhelming, or empowering… No matter your reactions, here are ten things you can do to start your journey to live well with Parkinson’s. 

  1. Empower yourself and those around you through education: Take the time to learn about Parkinson’s, its symptoms, and how it may affect your life. Share this knowledge with your close friends, family, and colleagues. If you are a care partner, discuss how the impacts of caring for someone with Parkinson’s affect you or your work. Reliable sources include peer-reviewed articles, peak bodies and discussions with your care team.
  2. Build a support network: Reach out to family, friends, and local support groups like Parkinson’s or care partner support groups in your area. Connecting with others who understand and have been on the journey longer than you can provide invaluable emotional support. Keep in mind that for young onset Parkinson’s, there may be more appropriate groups to interact with for your age and stage of life.
  3. Assemble a care team: Seek out healthcare providers experienced in treating Parkinson’s. Include GPs, neurologists, movement disorder specialists, and allied health professionals such as physiotherapists and occupational therapists. Your care team will be with you for a long time, so make sure you can be open with them and have a good rapport.
  4. Get moving: Engage in regular physical activity tailored to your abilities, such as walking, swimming, or Tai Chi. Exercise helps manage symptoms and improve overall wellbeing.
  5. Eat well: Maintain a balanced diet rich in fruits, vegetables, whole grains, and lean proteins. Mediterranean and MIND diets are currently being researched for their benefits in managing Parkinson’s. However, consult a dietitian to address any specific nutritional needs or concerns related to Parkinson’s.
  6. Manage medications: Work closely with your care team to develop a medication plan that effectively manages your most bothersome symptoms while minimising side effects. Keep track of medications and follow prescribed schedules. Some great tips are to see a Parkinson’s Nurse Specialist between neurology visits and maintain a regular Pharmacist.
  7. Plan for the future: Consider employment, legal and financial matters, such as creating or updating your will, discussing advance care directives, and exploring government support like NDIS (>65).
  8. Stay informed: Keep abreast of Parkinson’s research and treatment advancements. Parkinson’s Australia and other organisations offer resources and updates that can empower you to make informed decisions about your care.
  9. Practice self-care: Take time for activities that bring you joy and relaxation, such as hobbies, mindfulness practices, or spending time in nature. Managing stress and prioritising self-care is essential for overall wellbeing.
  10. Advocate for yourself: Be proactive in your healthcare journey. Ask questions, voice concerns, and advocate for the support and resources you need. Your voice matters in shaping your care and treatment plans. Keeping track of your most bothersome symptoms or what happens on your worst/best days can be a helpful starting point.

Navigating Parkinson’s can be challenging, but by being proactive and embracing available supports and resources, you can empower yourself to live well and confidently with Parkinson’s. Start by looking at how NDIS funding will help you access therapies and services that can keep you well longer. See our step-by-step guide for more. 

References

Bloem, B.R., Okun, M.S. and Klein, C., 2021. Parkinson’s disease. The Lancet, 397 (10291), pp.2284-2303.

Post, B., Van Den Heuvel, L., Van Prooije, T., Van Ruissen, X., Van De Warrenburg, B. and Nonnekes, J., 2020. Young onset Parkinson’s disease: a modern and tailored approach. Journal of Parkinson’s disease, 10(s1), pp.S29-S36.

Shah, R., Read, J., Davies, N., Nimmons, D., Pigott, J., Schrag, A., Walters, K. and Armstrong, M., 2022. People with Parkinson’s perspectives and experiences of self-management: qualitative findings from a UK study. PLoS One, 17(9), p.e0273428.

Waller, S., Williams, L., Morales-Briceño, H., Fung, V.  2021. The initial diagnosis and management of Parkinson’s disease. Australian Journal of General Practice. 50(11).

Share

Other articles

  • 101 | Parkinson’s symptoms

    Young Onset Parkinson’s: Understanding Parkinson's symptoms & what can help A diagnosis of young onset Parkinson’s raises questions about what symptoms you might chalk up to your condition and what to do next. This guide explains motor and non-motor symptoms in plain language. Use it to understand what symptoms you may notice but may think [...]

  • Parkinson’s & Swallowing Problems

    By Eric UfiPoa Taule’ale’ausumai "It was a stroke that almost knocked me down, but it was dysphagia that became the dark cloud that stayed." – Eric Ufipoa Taule’ale’ausumai Many different conditions can cause swallowing difficulties, but the impact is the same. While my swallowing challenges came from a stroke at just 32 years old — [...]

  • 101 | Preparing for appointments

    Reprinted from a Parkinson’s WA article with permission from author David Blacker AM, MB BS, FRACP;  Medical Director, Perron Institute; Parkinson's Australia Board director; Board member Parkinson’s WA I’ve recently retired after 30 years of medical practice, having seen thousands of patients in that time. Over the last 18 months, I’ve spent a lot of time on [...]