Tasks required to be undertaken by the employee need to be assessed as ‘do-able’. If difficulty is experienced, the workspace and the way tasks are carried out may need to be modified. Management also need to be aware of the unpredictability and symptoms including on/off times, i.e. what is the time of day where the employee is most able and productive. I was diagnosed 18 years before I retired, and I have now been retired for just over 2 years. I felt supported to some degree. I experienced changes in management at least 3 times in the 6 years or so prior to retirement. Had difficulty at times and felt under stress due to some lack of understanding. I enlisted the aid of Workplace Solutions, who acted as an advocate for me and liaised with management on my behalf. Workplace Solutions were also able to access equipment for my use to help make my tasks easier, i.e. hand support weights, large-tiled keyboard for computer. I was supported by co-workers.

The most debilitating issues with regards to my working capacity were slowness of movement, fatigue/lack of sleep, muscle stiffness and rigidity, standing and walking, handwriting, anxiety and depression, speech and communication and tremor/Dyskinesia/Dystonia. The most difficult times of the work day were just before lunch, about midday and about mid afternoon.

Enhanced employer understanding of the impacts of young onset Parkinson’s and the removal of specific tasks could have been helpful to support me to stay in the workforce longer. With change in management and apparent limited knowledge of how Parkinson’s symptoms affect functioning, I had workplace assessments and regular follow-ups. When I was initially diagnosed, I did not inform my employer for the first 10 years at my workplace. I was relocated within the government (not due to having Parkinson’s) and my employer was informed by my Workcover case manager. I have a mixed opinion about disclosure. One view is that it is out in the open and management is aware of the employee’s capabilities and make necessary adaptations to make the job easier. The other view is, it depends on the employer’s attitude as not all are understanding, which can arise out of ignorance or impatience. Disclosure can also draw increased unwanted attention to the PWP leading to stress and anxiety. I contacted HR and enlisted the aid of an advocate from Workplace Solutions. I am aware of some PWP having experienced a lack of understanding from their employers and co-workers. I think this arises from ignorance of the condition and its symptoms and the possibility that they don’t know what to say to the PWP. Employers would be advised to contact PSA and obtain pertinent information regarding the condition and ramifications of a person with Young Onset Parkinson’s.