The role of those close to you in managing YOPD.

Living with young onset Parkinson’s disease (YOPD) significantly impacts not just the person living with Parkinson’s but also their friends, family, and carers. Strong relationships are essential in navigating the challenges posed by YOPD, ensuring both the patient and their support network feel understood and supported.

Friends play a crucial role in providing emotional support and a sense of normalcy. However, they might find it challenging to understand the daily struggles of YOPD. Open communication is key. Catch up for a coffee or lunch and let them share their experiences and feelings while offering their care partner a bit of respite. Friends can educate themselves about the condition to foster empathy and patience.

Family members often become primary carers, balancing their responsibilities with their own lives. This dynamic can strain family relationships but maintaining honesty and seeking support are vital. Families should strive to establish routines and systems that work for everyone and consider joining support groups to connect with others in similar situations.

Whether family members or professionals, carers face the demanding task of managing both physical care and emotional support. Carers need to practice self-care and seek respite when needed. Utilising available resources, such as respite care and counselling, can help manage the stress associated with caregiving.

Regularly check in with each other to ensure everyone is on the same page. Use “I” statements to express feelings without blaming others, and practice active listening. Learn more about effective communication.

Education and understanding

Encourage friends and family to learn about YOPD. Understanding the condition can lead to greater empathy and more effective support.

Support networks

Join support groups and connect with others facing similar challenges. This can provide emotional relief and practical advice.

Shared activities

Engage in activities that everyone enjoys. Shared activities can strengthen bonds, whether a hobby, a sport, or simply spending time together.

Professional help

Don’t hesitate to seek professional help, such as counselling or therapy, to navigate the emotional complexities that come with YOPD.

Building and maintaining strong relationships can significantly improve the quality of life for everyone involved. Remember, it’s a journey you don’t have to walk alone. Together, you can face the challenges and celebrate the triumphs of living with YOPD.

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Carers’ Hacks

  • Have an OT assessment at home for strategies and suggestions for assistive technologies that can make everyday tasks easier for you and your person with Parkinson’s.
  • Remove clutter from the household. Not only does this help with removing trip hazards, but it also helps with cognitive stress.
  • Implement safety measures like non-slip mats and grab bars to prevent falls.

  • Find out what supports you are entitled to as a carer through Carers Australia and the Carers Gateway.
  • Ensure your workplaces knows about the Carer Inclusive Workplace Initiative and the resources they can use to see how they can help you stay working for longer.
  • Don’t be afraid to ask friends to take your person with Parkinson’s out for coffee or sit with them at home while you go out and run errands for a bit of respite.
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Parkinson’s Australia National Conference

6-8 April 2025, National Convention Centre Canberra, ACT