Young onset Parkinson’s (YOP) presents a unique and complex set of challenges. While many healthcare professionals familiar with Parkinson’s understand the classic motor symptoms, the tremor, rigidity, bradykinesia, and postural instability, the reality for those living with YOP is far more nuanced. Notably, the condition is characterised by “on” and “off” fluctuations, meaning that the state of functioning can vary dramatically not only from day to day, but often within a single day. This article is intended to provide NDIS staff and allied health professionals with a deeper insight into these fluctuations, the mental stress stemming from constant uncertainty, and the significant impact on everyday life responsibilities.
The Complexity of On-Off Fluctuations
Parkinson’s is not a static condition. Many people experience periods when their medication is working effectively, often termed “on” periods, during which motor function, cognition, and overall performance may be close to optimal. However, these periods are frequently interspersed with “off” periods, when the benefits of medication wear off, and symptoms return with vigour. For those living with YOP, this unpredictability is not just a clinical observation, it is an everyday reality.
Understanding and recognising these “on” and “off” cycles is essential. On “on” days, a person might appear energetic, articulate, and fully functional. Yet, this snapshot does not capture the broader picture. Off days can bring significant challenges: increased tremor, rigidity, impaired balance, slowness of movement, cognitive lapses, and a host of non-motor symptoms such as fatigue, pain, anxiety, or depression. This volatility means that evaluating someone on a single day can be profoundly misleading. Effective assessment, planning, and support require a holistic view that accounts for these fluctuations rather than a snapshot of their best performance.
The Hidden Burden of Uncertainty
Imagine waking up every day not knowing which of the approximately 40 recognised symptoms of Parkinson’s will be most challenging. One morning, you might feel capable and even optimistic, but as the day unfolds, motor difficulties, cognitive issues, fatigue, and other non-motor symptoms could suddenly dominate. This constant shifting places a significant mental and emotional toll on people with YOP and their loved ones.
The uncertainty is exhausting. Not only does it affect physical performance, but it also impacts self-esteem and emotional wellbeing. Many people live with a persistent fear of the next “off” period—a fear that can induce anxiety and stress even before the day’s challenges begin. Research indicates that stress can exacerbate Parkinson’s symptoms, leading to more frequent or prolonged “off” periods (Connolly & Lang, 2014). Consequently, managing stress is not merely an aspect of improving quality of life; it is sometimes a necessary component of symptom management.
The Impact on Daily Life and Responsibilities
For many with young onset Parkinson’s, life continues alongside the progression of the condition. Unlike older populations, those with YOP often have ongoing work commitments, young families, and caring responsibilities. They may be in the prime of their careers or actively engaged in caring for children, grandchildren and/or ageing parents. Each of these roles demands reliability and consistency, qualities that can be undermined by the fluctuations associated with YOP.
Consider the scenario of a person who appears energetic and fully functional on a morning after a good night’s sleep when their medication is at its peak effectiveness. They might attend a meeting, participate in exercise, social activities, or even take on additional responsibilities at home. However, later in the day, as the effects wear off, the same person might struggle with simple tasks, withdraw from conversations, or even be unable to care for their children or manage household activities. This oscillation not only impacts the person’s quality of life but also places an unseen burden on families, colleagues, and care networks.
For those responsible for planning support through the NDIS and other allied health frameworks, recognising these dual realities is paramount. A single consultation or assessment that happens during an “on” period might fail to represent the full spectrum of challenges encountered by a person with YOP. This gap in understanding can lead to underestimating the level of support and the flexibility required to provide effective care.
The Mental Stress of Living with YOP
The mental stress of living with an unpredictable condition cannot be overstated. People with YOP contend with the day-to-day reality of wondering which set of symptoms will dictate their day. Some days, it may be the physical difficulties, but on other occasions, it might be severe cognitive or emotional challenges. This ever-present uncertainty can lead to chronic stress, which, as noted earlier, can in turn worsen symptoms. This is a vicious cycle that is as frustrating as it is debilitating.
It is important for NDIS staff and allied health professionals to appreciate that the struggle is not solely about managing physical symptoms. The psychological and emotional impacts are profound. The anxiety of never knowing whether you’ll be “on” or “off” can inhibit going for a promotion at work, reduce participation in social events, and even contribute to self-isolation or feelings of depression. An appalling level of mental stress might also compromise self-care routines or deter people from seeking timely help when needed. Building mental health support into care planning is thus an essential component of maximising overall wellbeing.
A Call for Greater Understanding and Holistic Support
Historically, there has sometimes been a lack of comprehensive understanding of the diverse experiences of people with YOP. Too often, assessments and interventions focus narrowly on a single point in time rather than the fluid, shifting nature of the condition. This is where a more nuanced approach is required—one that begins with NDIS staff and AHPs developing a deeper understanding of the day-to-day realities of YOP.
For the majority of people living with YOP, the journey is marked by the need to balance multiple roles. They are professionals, parents, carers, and community members. Their responsibilities extend far beyond their healthcare and support needs. Understanding the full impact of Parkinson’s on their lives means recognising that a simple “snapshot” of function is inadequate. Instead, support plans should account for variability, ensuring that interventions are flexible and personalised. This might involve creating schedules that incorporate planned rest periods, flexible work arrangements that accommodate “off” periods, and support systems that are responsive to sudden fluctuations in symptom severity.
Practical Steps for NDIS Staff and Allied Health Professionals
- Comprehensive Assessment Over Time: Rather than relying on one-off assessments, professionals should gather detailed histories and, where possible, monitor patients over an extended period. This will help capture the range and frequency of “on” and “off” periods, as well as the presence of non-motor symptoms that may not be evident during a single visit. If a person is “on” their tremor may completely go away, while when “off” they could shake so badly that they can do only minimal activities.
- Integrated Multidisciplinary Approaches: Encourage a care team-based approach that includes neurologists, physiotherapists, occupational therapists, psychologists, and social workers. Each discipline brings a unique perspective and set of skills to help manage both motor and non-motor symptoms effectively. Multidisciplinary care is especially vital for people juggling work, caregiving, and social responsibilities.
- Personalised and Flexible Planning: Recognise that due to the unpredictable nature of YOP, support plans should be dynamic. Regular reviews and adjustments of the plan can ensure that the fluctuating needs of the person with Parkinson’s are met. For example, scheduling additional support during known “off” periods or providing resources for stress management and mental health support.
- Education and Communication: It is crucial for NDIS staff and AHPs to maintain open lines of communication with people living with Parkinson’s and their families. Educating them about the potential for fluctuations and the strategies available to mitigate their effects can empower people to take control of their care. This ongoing dialogue can help build trust and enhance compliance with therapeutic interventions.
- Stress Management Strategies: Considering that stress significantly exacerbates symptoms, integrating stress management into care plans is essential. This may include recommending therapies such as mindfulness, cognitive behavioural therapy (CBT), or supportive counselling. Equipping people with the tools to manage their stress can indirectly improve their overall motor function.
- Considering Family and Community Roles: Many people living with YOP are embedded in complex family or community roles. Support plans should therefore address the broader impact of the condition by offering resources or referrals for family counselling, workplace adjustments, and community support groups. Recognising that the burden extends beyond the person living with Parkinson’s can prompt more compassionate and holistic care planning.
The Way Forward
The journey with young-onset Parkinson’s is highly individualised. One day someone may appear to be in excellent shape, yet the next day they may struggle to perform basic tasks. As such, honest and empathetic communication is critical. NDIS and allied health professionals must step beyond the traditional one-dimensional approach to form a comprehensive picture that appreciates the realities of on and off fluctuations and the profound mental stress that accompanies them.
Greater understanding begins with education. It is essential that all professionals involved in the planning and provision of care are aware of the diverse symptoms and unpredictable nature of YOPD. This enhanced understanding is not solely to improve clinical outcomes; it’s about supporting people to lead fulfilling, active lives despite the challenges of their condition.
By adapting assessment techniques, embracing multidisciplinary approaches, and maintaining flexibility in service delivery, NDIS staff and allied health professionals can contribute significantly to improving the quality of life for those with YOPD. Moreover, recognising and addressing the mental and emotional components of the condition are just as critical as managing its physical symptoms—if not more so—in fostering resilience and long-term wellbeing.
Ultimately, the goal is to ensure that every person with young-onset Parkinson’s receives not only effective medical care but also the compassionate, tailored support that acknowledges their full range of responsibilities and aspirations. With a concerted effort from all involved, we can move toward a more responsive and holistic system—one that truly sees and supports the whole person.
References
Connolly, B. S., & Lang, A. E. (2014). Pharmacological treatment of Parkinson disease: A review. JAMA, 311(16), 1670–1683. https://doi.org/10.1001/jama.2014.3654
Mantri, S., Lepore, M., Edison, B., Daeschler, M., Kopil, C. M., Marras, C., & Chahine, L. M. (2021). The Experience of OFF Periods in Parkinson’s Disease: Descriptions, Triggers, and Alleviating Factors. Journal of patient-centered research and reviews, 8(3), 232–238. https://doi.org/10.17294/2330-0698.1836
National Institute for Health and Care Excellence. (2017). Parkinson’s disease in adults: Diagnosis and management. NICE Clinical Guidelines. https://www.nice.org.uk/guidance/cg76
Rastgardani, T., Armstrong, M. J., Gagliardi, A. R., & Marras, C. (2018). Understanding, Impact, and Communication of “Off” Periods in Parkinson’s Disease: A Scoping Review. Movement disorders clinical practice, 5(5), 461–470. https://doi.org/10.1002/mdc3.12672
