Employers should know about young onset Parkinson’s and that it’s not just shaking of hands. I am currently working, and I have been working with young onset Parkinson’s for 5 years. I did not feel supported by my employer/co-workers. Not at all at the beginning! Very isolated. The most debilitating issues with regards to my working capacity are fatigue/lack of sleep, handwriting, anxiety and depression, speech and communication.
The particular time of the work day that I find more difficult than other times is close to lunch time. Strategies or techniques that could be helpful to support me to stay in the workforce longer include flexibility to work around fluctuating symptoms, enhanced employer understanding of the impacts of young onset Parkinson’s, writing aids such as voice-to-text software to reduce the need to type and working from home. A formal process was not undertaken to determine my work capacity and support requirements, and absolutely it would have helped but work just stuck their head in the sand and performance managed. With regards to my thoughts on disclosure of young onset Parkinson’s to your employer and whether I feel it better assists the employer to provide earlier support, that is the million dollar question. I did not seek advice about my rights as an employee at the start but should of.
