FAQs

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 including work, young families and social life. It’s about navigating these challenges and knowing which supports to access while staying informed and empowered.

Here are some key differences between young onset Parkinson’s and regular Parkinson’s:

  1. Age of onset: The primary difference is the age at which symptoms first appear. Young Onset Parkinson’s occurs in individuals under 50, while regular Parkinson’s typically affects individuals over the age of 60.
  2. Progression: Young onset Parkinson’s may progress differently compared to regular Parkinson’s. Younger individuals may experience a slower progression of symptoms initially, but the disease can still advance over time.
  3. Impact on daily life: Young onset Parkinson’s 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.
  4. Treatment considerations: 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 the individual’s age, health status, and long-term goals.
  5. Research and support: There is a growing awareness of young onset Parkinson’s, 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 young onset Parkinson’s and regular Parkinson’s, both conditions share common symptoms and require a comprehensive approach to management involving medication, therapy, lifestyle modifications, and support from a multidisciplinary care team including healthcare providers, family, and friends.

Absolutely! Maintaining an active lifestyle is crucial as research shows that exercise has neuroprotective benefits for people with Parkinson’s. Exercise is also the only thing that has been shown to slow progression of Parkinson’s. When tailored to your abilities, exercise can improve mobility, balance, strength, medication uptake, mental health and overall wellbeing. Talk to your care team about creating a personalised fitness plan. Specifically seek advice from a neurophysiologist and/or exercise physiotherapist.

It’s possible to continue working with young onset Parkinson’s, but it is, generally, your choice to disclose your condition (unless your symptoms and side effects affect your capacity to safely fulfil your role). Open communication with your employer, exploring flexible working arrangements, and seeking support from colleagues can help maintain a fulfilling professional life. You may also be eligible for supports to help with increase costs of maintaining your wellbeing so you can continue to work.

Yes, there are numerous online communities and support groups tailored to individuals living with young onset Parkinson’s. Connecting with others who share similar experiences can be empowering and provide valuable insights (e.g. ask to be invited to private Facebook groups, join Parkinson’s Australia virtual roundtables). Search online or contact the infoline 1800 644 189 to be connected to a group near you.

Parkinson’s Australia also holds a National Conference every two years to bring people living with Parkinson’s together with carers, allied health professionals, researchers and other experts to build capacity and understanding. Make sure there is a goal of continuing your personal education around Parkinson’s in your NDIS plan and you should be able to fund you and your carer to support you to attend.

While relationships may evolve, many people with young onset Parkinson’s maintain fulfilling social lives. Open communication about the impacts of your symptoms with friends, colleagues and loved ones helps them understand your journey, fostering stronger connections. Check out our YOPX Relationships playlist on YouTube or through the YOPX app to learn more.

Absolutely! Adapting your favourite activities to your abilities and discovering new interests can not only be empowering, but also increases neuroplasticity.

  • Music, exercise, meditation, learning a new language and practising handwriting are just a few things you can do to increase neuroplasticity.
  • Many hobbies can be modified to suit your needs and bring joy to your life, don’t be afraid to ask an OT for suggestions.
  • There are Parkinson’s-specific art, photography, and singing groups you can join in state/territory Parkinson’s organisations.
  • Continuing education through apps or disability education services.
  • Staying socially connected and engaged in things you enjoy is an important part of maintaining your quality of life with Parkinson’s.

Be an active participant in your healthcare journey. Educate yourself about your condition, ask questions, and work collaboratively with your care team. Your voice matters in shaping your care plan with all members of your care team, as it should be tailored to your specific goals, most bothersome symptoms and priorities.

Bring along a care partner, family member or friend to help advocate with you if you are feeling uncertain. Appointments can be overwhelming, so if you can’t find someone to tag along, try to record the appointment to listen back to later. There are also paid services for patient advocates, support workers or companion drivers that can attend with you.

Join Parkinson’s Australia virtual roundtables to discuss concerns, share your experiences or listen in to others’ stories.

Follow us on our socials and share what you learn with others.

Yes, there are various technologies, including free Apps and wearable devices, designed to assist with symptom tracking, medication reminders, cognitive training, and overall wellbeing. Exploring these tools can enhance your daily life.

Occupational therapists and speech pathologists can also assess your needs and prescribe assistive technology (AT) for your symptoms… many that can be purchased through your NDIS plan.

Share information about the Parkinson’s symptoms that affect you most, openly and honestly. Encourage loved ones to ask questions and provide them resources to help them understand the condition better. Young onset Parkinson’s is similar to regular onset Parkinson’s, but not the same. People with young onset also tend to have a slower overall progression of the condition. Anyone can download the YOPX App or read the stories from others living with young onset online.

Our top 5 tips for talking to people about young onset Parkinson’s are to:

  1. Define young onset Parkinson’s: Tell them that young onset Parkinson’s is a form of Parkinson’s that is diagnosed in individuals under the age of 50, sometimes even as early as their 20s. While the symptoms are similar to those of older individuals with Parkinson’s, the impacts can be different due to your age and stage of life.
  2. Describe the symptoms: Explain the common symptoms of young onset Parkinson’s, such as changes to mood (e.g. depression, anxiety, apathy), cognition (e.g. inability to multitask, changes to executive function and slowness of thoughts resulting in word-finding) and movement (e.g. tremors, slowness of movement, rigidity, and balance issues). Emphasise how these symptoms affect your daily activities and quality of life.
  3. Discuss challenges and suggest adjustments: Mention the unique challenges that come with managing young onset Parkinson’s, such as juggling work, family responsibilities, and social life while dealing with your symptoms and their fluctuations. Talk about the adjustments that may be needed in terms of lifestyle, flexible working arrangements, communication methods and how this may impact your relationships.
  4. Highlight treatment options: Share information about treatment options available for managing young onset Parkinson’s, including medications, therapies, and lifestyle changes. Encourage your friends and family to be supportive and understanding around what you need to do to stay well with Parkinson’s.
  5. Emphasise emotional support: Acknowledge the emotional impact of young onset Parkinson’s and the importance of emotional support from loved ones. Encourage open communication, empathy, and patience in dealing with the challenges that may arise.

By educating your friends and family about young onset Parkinson’s in a clear and honest manner, you can help them better understand your condition and provide the support you need.

Yes, travel is possible! Planning ahead, considering accessibility, and communicating your needs can make exploring the world an enriching experience. Many people with young onset Parkinson’s continue to embark on exciting journeys.

Some helpful tips are to:

  • book your tickets through the airline directly to ensure you can get your disability needs met
  • use your companion card when booking for your care partner/support worker
  • look into getting an invisible disability or sunflower lanyard (some airports provide these for free, but you may need to request one 14 days prior to your trip) to get priority boarding and through security in the fast lane
  • pack meds in your carry-on and checked luggage or travel companion’s carry-on and take extras along
  • check international regulations on your medications and carry a letter from your neurologist/GP with your diagnosis and medications list
  • don’t be afraid to ask for assistance, this can reduce the stress of travel
  • don’t forget to keep drinking water and taking your medications on time
  • ask for accessible rooms in hotels and accessible seats on planes or trains
  • book a hotel room in airports for long layovers
  • allow plenty of time to check in and travel through airports.

Remember, planning ahead and communicating your needs can make travel more enjoyable.

Navigating life with young onset Parkinson’s is a journey that’s as unique as you are. Your experiences, choices, and lifestyle all play a role in shaping this adventure. Everyone with Parkinson’s has their own set of challenges and victories, and no two paths are the same. While some patterns may be common, the course of Parkinson’s is full of surprises and silver linings. It’s impossible to predict exactly what symptoms might pop up, their timing, or how intense they’ll be. But remember, this is your story, distinct and different from anyone else’s. You’re not alone, though—here are some questions often asked by others walking a similar path.

Atmospheric, out of focus image of a convention in progress.

Parkinson’s Australia National Conference

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