Employers should know that people with young onset Parkinson’s can still work unless there are cognitive issues leading to safety risks. I was just forced into retirement last year at age 58. I continued to work for 5 years after my diagnosis.
I felt very much supported by my employer/co-workers, so by most of them. Only the younger ones complained about me being slow on the job. The most debilitating issues with regards to my working capacity were slowness of movement, fatigue/lack of sleep, muscle stiffness/rigidity, sitting for long periods, handwriting, difficulty with getting to work, problem solving and memory issues, pain, speech and communication and Tremor/Dyskinesia/Dystonia. They were 12hr rotation shifts. All of them were hard, long and very tiring. Strategies or techniques that may have been helpful to support you me stay in the workforce longer could have included flexibility to work around fluctuating symptoms, enhanced employer understanding of the impacts of young onset Parkinson’s, the removal of specific tasks, modified work space and reduced hours.
A formal process was not undertaken to determine my work capacity and support requirements. This would have been very useful though. Regarding my thoughts on disclosure of young onset Parkinson’s to an employer, It would be really good for better understanding of all employers and employees to understand it. I did seek advice about my rights as an employee. My wife looked into reduced hours but I wasn’t keen as I didn’t want the boss to think I wasn’t coping. I think it depends on what type of work you do. As I was maintenance on heavy machines, my work was very demanding and hours very long. The fatigue was affecting my ability to function both physically and mentally. I think that if there was less stigma about men in general not showing weakness in their abilities to work, it would make working longer easier but not feeling bad for working shorter days.
