Employee: We are functional and have drive & passion for our work

Employers should know that young onset Parkinson’s employees can still be just as functional and have as much drive and passion for their work as they always have. They may just need a bit more flexibility to juggle their workload with their symptoms. I continued working for about 6 1/2 years after diagnosis, and I am no longer working. I was very fortunate to have great support from both my employer and colleagues. The most debilitating issues with regards to my working capacity are slowness of movement, problem solving and memory issues, and tremor/Dyskinesia/Dystonia. With regards to the particular time of the work day that I found more difficult than other times, early afternoon was my weakest time.

Strategies or techniques that may have been helpful to support me to stay in the workforce longer include flexibility to work around fluctuating symptoms, writing aids such as voice-to-text software to reduce the need to type, a hands free phone, reduced hours and working from home. A formal process as not undertaken to determine my work capacity and support requirements, but I had access to whatever I wanted. With regards to my thoughts on disclosure of young onset Parkinson’s to your employer, I recommend taking some care in who and when to disclose to. Perhaps seeking a trusted member of senior management to use as a sounding board. In general though I advocate for early disclosure if at all possible as I believe it takes pressure off you and avoids ambiguity as to any behavioural and performance anomalies for employers. I did not seek advice about my rights as an employee. I found working though the logistical impacts of young onset Parkinson’s regarding income continuance, health and insurance and retirement and superannuation planning difficult. Any resources on this would have been helpful.