Employers should know that people with young onset Parkinson’s can still be employed (we don’t suddenly become incompetent) and how to modify work environments to accommodate specific needs. Also to educate themselves on the range of symptoms that employees might be dealing with, and that PD can be diagnosed in young people, it is not just an old peoples disease. Ensure that they realise that not all symptoms are visible. I am no longer working, and I continued to work for 18 months after my diagnosis. I did not tell my employer until I was retiring. The most debilitating issues with regards to my working capacity were sitting for long periods, handwriting, anxiety and depression, tremor/Dyskinesia/Dystonia. With regards to a particular time of the work day that I found more difficult than other times, tremor was likely to rear its head at any time of the day.
Reduced hours could have been helpful to support me to stay in the workforce longer. A formal process to determine my work capacity and support requirements was not undertaken because my employer unaware of my diagnosis I don’t think anything would have been helpful as the standard workplace modifications would not be able to be applied in my job as a teacher.
Regarding my thoughts on disclosure of young onset Parkinson’s to your employer, it’s none of their business in the early years unless it had a direct impact on the quality of my work and they could provide adjustments. I did not seek advice about my rights as an employee. Teaching young children is particularly difficult – how can you stand up in front of a class when this brings on extreme tremor! Looks like you have been drinking. And then the kids notice and ask why you are shaking. Handwriting is difficult – slow and untidy – once again not a good look for a teacher.
