Employers should know that young onset Parkinson’s is very different to Parkinson’s diagnosed later in life, with many and varied symptoms. Not everyone is the same. The fatigue is probably the most significant symptom. Consideration needs to be given to making reasonable adjustments to work patterns and not look down upon the worker as a lesser person who is trying their best to understand, cope mentally and physically with the condition and any treatment they are having to manage symptoms. I am no longer working, and I continued to work 18 months after my diagnosis. Did I feel supported by my employer/co-workers? Yes and no.
It was a difficult process to get reasonable work adjustments and then there was a distinct change in attitude towards me because I made my condition known. Non-verbal aggression and bullying was experienced and I felt like they were trying to make my days more difficult so I would leave. The most debilitating issues with regards to my working capacity were slowness of movement, fatigue/lack of sleep, muscle stiffness/rigidity, standing and walking, sitting for long periods, handwriting, difficulty with getting to work, anxiety and depression, constipation and bladder control, hypertension/low blood pressure, problem solving and memory issues, pain, speech and communication, tremor/Dyskinesia/Dystonia.
All day mostly was a difficult time. Strategies or techniques that may have supported 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, modified work space, writing aids such as voice-to-text software to reduce the need to type and working from home. With regards to disclosing young onset Parkinson’s to your employer, depends on the employer. I believe some are good and others not. If you’re part of a union it’s a help. I sought advice about my rights as an employee and my union was very helpful. Disclosing a chronic medical condition to an employer needs to be handled very carefully, and I believe an advocate for the employee should be present at any discussion, and any agreement reached on any support required should ensure the worker has his rights protected and respected.
