Employers should know about young onset Parkinson’s so that they can put into place changes to work stations and modify roles as required. Not force them to retire on the grounds of ill health as in my case. I am no longer working, and I worked for 2.5 years after my diagnosis. I did not feel at all supported by my employer and line manager. The most debilitating issues with regards to my working capacity were handwriting, anxiety and depression, and speech and communication. The time of work day that I found more difficult than other times was 2pm. Strategies or techniques that may have been helpful to support me to stay in the workforce longer could have been flexibility to work around fluctuating symptoms, enhanced employer understanding of the impacts of young onset Parkinson’s, the removal of specific tasks and reduced hours. A formal process was not undertaken to determine my work capacity and support requirements and yes this would of been useful, instead my employers Occupational Physician decided that I was unfit to work despite reports from my Neurologist, a cognitive Neurologist and 2 days of Neurological testing.

All these professionals recommended that I could work 0.6 and in a less stressful role. In my case I feel I should not have been open and honest with my employer. It led to forced retirement. I did seek advice about your rights as an employee, and I fought for 2 years to be employed in a lower level less stressful role but the largest employer in the state advised that there were no positions available.

Financially this has been devastating to our plans and superannuation.