Employers should know about young onset Parkinson’s symptoms such as frequent severe dizziness, low blood pressure, chance of fainting when moving from low to high position, limitations due to tremors in hands and feet, balance issues, slowness and fatigue. I worked in a full time position for 1 year and then two days a week for 3 years since my diagnosis in 2016. I’m currently not working.

Overall, my employer/co-workers were very understanding. The most debilitating issues with regards to my working capacity were slowness of movement, fatigue/lack of sleep, standing, walking, sitting for long periods, handwriting, constipation and bladder control, hypertension/low blood pressure, speech and communication and tremor/Dyskinesia/Dystonia. I got more tired and fatigued as the day went on. Strategies that may have been helpful to support me to stay in the workforce longer could have been enhanced employer understanding of the impacts of young onset Parkinson’s, the removal of specific tasks, writing aids such as voice-to-text software to reduce the need to type and reduced hours.

I didn’t have a formal process undertaken to determine my work capacity and support requirements, but I advised employer that there were certain tasks that I felt it would be wise for me not to undertake. It was nothing formal though. I was very willing to advise my employer as a means of improving their understanding of Parkinson’s and its symptoms. I didn’t seek advice about my rights as an employee.

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