Employers should know that a staff member with YOPD can still contribute, and be a productive and valuable asset to any organisation. I have been working with young onset Parkinson’s for 6 years and I feel supported by my employer/co-workers. The most debilitating issues with regards to my working capacity are fatigue/lack of sleep, muscle stiffness/rigidity, sitting for long periods, handwriting, anxiety and depression and hypertension/low blood pressure. Particular time of the day is not an issue. Strategies or techniques that may be helpful to support me to stay in the workforce longer could include modified work space and writing aids such as voice-to-text software to reduce the need to type. My boss is very understanding. He just never talks about it. It’s like the elephant in the room.
He knew before I started, and I have never needed to seek advice about my rights as an employee. I am working in my current role, in a job I hate, because it was offered to me. I am grateful for this. I find it very unlikely that I be offered the job that I actually want to do because of my PD
