Employers should know how debilitating young onset Parkinson’s can be. I worked for 6 months after my diagnosis. Doctor suspected much earlier and sought a Neurologist assessment. By the time I saw the Neurologist I had already left my employment. I did not feel supported by the employer. Some co-workers were empathetic. The most debilitating issues with regards to my working capacity were slowness of movement, fatigue/lack of sleep, muscle stiffness/rigidity, standing, and walking, handwriting, anxiety and depression, constipation and bladder control, tremor/Dyskinesia/Dystonia.
My employer fluctuated my hours, mostly late afternoon shifts, and this exacerbated the tremors and fatigue. Flexibility to work around fluctuating symptoms and enhanced employer understanding of the impacts of young onset Parkinson’s could have been helpful to support me to stay in the workforce longer. No formal process was undertaken to determine my work capacity and support requirements. The company was more interested in moving me on because of the Parkinson’s. Disclosure in the cleaning industry which I worked, you wouldn’t be considered for the work. I didn’t seek advice about my rights as an employee as I didn’t know my rights. Support would be the biggest need.
