YOP hits different

Young onset Parkinson’s generally refers to people diagnosed with Parkinson’s in their 20s to 50s.

What is young onset Parkinson’s and how does it differ from Parkinson’s?

We often say that “YOP hits different” because you face distinct life stage challenges, such as managing a career, dating, pregnancy, and family responsibilities while living with the condition. We have created the Young Onset Parkinson’s Exchange (YOPX) app & website to help those living with YOPD, their families, carers, NDIS staff and allied health professionals in your care team.

Young onset Parkinson’s is usually defined as Parkinson’s diagnosed before the age of 50. While symptoms are similar to regular Parkinson’s, its onset at a younger age presents unique challenges. It’s about navigating these challenges and knowing which supports to access while staying informed and empowered.

  • The primary difference is the age at which symptoms first appear. YOP occurs in individuals under 50, while regular Parkinson’s typically affects people over the age of 60.
  • YOP may progress differently compared to regular Parkinson’s. Younger people may experience a slower progression of symptoms initially, but the condition will advance over time.
  • YOP can have a significant impact on a person’s career, family life, and social activities at a younger age, leading to unique challenges in managing the condition while fulfilling various responsibilities.
  • The treatment approach for young onset Parkinson’s may need to be tailored to address the specific needs and lifestyle of younger individuals. Certain medications or therapeutic interventions may be chosen based on your age, health status, and long-term goals.
  • There is a growing awareness of YOP, leading to increased research efforts and support services specialised for this population. Younger individuals may benefit from resources and programs specifically designed to address their unique needs and challenges. Participate in clinical trials and submit your genes to help further this research.
  • While there are differences between YOP and regular Parkinson’s, both conditions share common symptoms and require a multidisciplinary approach to management involving medication, therapy, lifestyle modifications, and support from a care team including allied health professionals, family, and friends.

The Young Onset Parkinson’s Exchange

The Young Onset Parkinson’s Exchange (YOPX) is a comprehensive resource hub designed to support individuals with young onset Parkinson’s disease – an initiative of Parkinson’s Australia. Developed as a living lab model, the app and website are built on the experiences, ideas, knowledge, and daily needs of people living with young onset Parkinson’s.

Key features include:

  • NDIS resources to streamline your application: In Australia, we have tailored our information for the 64 and under cohort due to NDIS funding that is available for supports associated with early intervention (Section 25 of the Act) as well as core supports and capacity building. Surveys and questionnaires can be exported and help complete your NDIS application or reviews, set and achieve your goals, and access resources.
  • Personalised Tools: Features like notifications, Daily Goals, Employment Check-in and Flexible Working Arrangements Form to assist with daily tasks and planning.
  • YOP Community Stories: Over 250 individual stories and experiences shape these tools and resources. Case studies and stories are available to share with NDIS staff, your care team, colleagues, friends and family.
  • Wellbeing Resources: Be Well videos and check-ins addressing mental health, mindfulness, ICDs, fatigue, exercise, nutrition, relationships, and intimacy.

Key Statistics

  • About 10 to 20 percent of people with Parkinson’s experience symptoms before age 50.
  • YOP or early onset Parkinson’s often experience a slower progression of Parkinson’s symptoms.
  • Symptoms associated with YOP aka may include pain, muscle stiffness, cramping (dystonia), and involuntary movements (dyskinesias).
  • Genetics also may play more of a role in YOP, (e.g. PARK2 genetic mutation).
  • People living with YOP may respond differently to treatments and have fewer co-morbidities, so are better candidates for surgical interventions and new therapies.

How do I access supports and services?

Accessing occupational therapy services can make a significant difference in managing the symptoms of Parkinson’s, improving quality of life and maintaining independence.

It’s advisable to explore all available pathways to find the support that best suits your individual needs. Look to:

  • getting a GP referral to allied health professionals with Parkinson‘s experience
  • your state-based Parkinson’s organisation for advice on services to access
  • private health to see what is covered in relation to consultations and expenses
  • NDIS plan supports, how to apply?

Can I still work with young onset Parkinson’s?

Navigating the workplace with young onset Parkinson’s can present challenges, but with the right strategies and support, you can continue to thrive in your professional life and make meaningful contributions to your community.

  1. Adapting your work environment and routines can help you manage the symptoms of Parkinson’s. Consider ergonomic workstations, flexible hours, and regular breaks to accommodate your needs.
  2. Open communication with your employer and colleagues is crucial. Discuss your condition and any specific accommodations you may need. Support from your workplace can make a significant difference in managing your symptoms and maintaining productivity.
  3. There are various flexible working arrangements that can help you perform your job effectively. These may include assistive technologies, modified tasks, and changes in responsibilities. Your employer is often legally required to provide reasonable accommodations to support you.

Remember, there are often legal protections and strategies in place to support individuals with health conditions. Understanding your rights and the support available to you can empower you to continue working and contributing to your community.

It’s possible to continue working with YOP, and it is generally your choice to disclose your condition. However, if your symptoms or side effects affect your ability to safely fulfil your role, it may be necessary to inform your employer. This may also be a condition of your contract. Seek advice from HR. Open communication can reduce the stress associated with hiding your condition and help you find the support you need.

You may be eligible for NDIS support to help with the increased costs of maintaining your wellbeing so you can continue to work. This support can cover various services and equipment that enhance your ability to perform your job and manage your condition. Find out more about employment & legal options at the Young Onset Parkinson’s Exchange (YOPX website).

Find out more at our YOPX app & website

Dowload a FREE app and check out our resource hub with information on how to live well and manage young onset Parkinson’s, including step-by-step NDIS tips and information specifically tailored to living well with YOP.

References:

Klepac, N., Habek, M., Adamec, I., Barušić, A. K., Bach, I., Margetić, E., & Lušić, I. (2013). An update on the management of young-onset Parkinson’s disease. Degenerative neurological and neuromuscular disease, 2, 53–62. https://doi.org/10.2147/DNND.S34251

Post, B., van den Heuvel, L., van Prooije, T., van Ruissen, X., van de Warrenburg, B., & Nonnekes, J. (2020). Young Onset Parkinson’s Disease: A Modern and Tailored Approach. Journal of Parkinson’s disease, 10(s1), S29–S36. https://doi.org/10.3233/JPD-202135

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Parkinson’s Australia National Conference

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