Employers should know that regular rest periods assist people with young onset Parkinson’s to maintain their abilities. I left the work force six months prior to diagnosis, and I did not feel supported by my employer/co-workers to remain in my then position. The most debilitating issues with regards to my working capacity were slowness of movement, fatigue/lack of sleep, muscle stiffness/rigidity, handwriting, problem solving and memory issues, and speech and communication. The later in the day the tougher things became.
Flexibility to work around fluctuating symptoms and reduced hours could have been helpful to support me to stay in the workforce longer. I did not have a formal assessment to determine my work capacity and support requirements, and I may have been able to have sought alternate employment that offered more flexibility of workload and deadlines. I feel that disclosure of young onset Parkinson’s to your employer would assist the employer to provide earlier support. I didn’t seek advice about my rights as an employee as I was still trying to work out what was going on with my abilities. Greater public awareness of young onset Parkinson’s will help those affected, yet it remains extremely difficult maintaining employment in the private sector.
