Employee: I have worked full time for 10 years since my diagnosis

Employers need to understand, and often do, that all people are individuals who have unique symptoms, rates of disease progression and responses to their condition. I work full time and have continued to do so since my diagnosis 10 years ago. I feel supported by my employer/co-workers. The most debilitating issues with regards to my working capacity are fatigue/lack of sleep, handwriting, speech and communication. The time of the work day that I find more difficult than other times is after 3pm. Strategies or techniques that could be helpful to support me to stay in the workforce longer include flexibility to work around fluctuating symptoms and reduced hours.

A formal process was undertaken to determine my work capacity and support requirements. I was assessed by my GP in relation to my capacity to work. No support requirements were needed and I have not requested any. With regards to my thoughts on disclosure of young onset Parkinson’s to your employer, I have found it difficult to disclose my Parkinson’s as I have not often had very noticeable symptoms but have found it to be a positive experience. Without disclosure, employers cannot provide any support so whenever support is received it will be earlier than in the case of non-disclosure.

I have not sought advice about my rights as an employee.

More emphasis should be placed on the importance of maintaining physical and brain health as well as targeted neuroplasticity in Young Onset Parkinson’s. Without using and continuing to challenge your mind and body they will deteriorate more quickly.