Chairperson: Managed Parkinson’s does not have to impact employment

Employers should know that Parkinson’s when managed does not necessarily have to impact employment. We encourage cancer and other disease patients to return to work, so why not make similar adjustments to people with PD. After diagnosis, I spent three years working full time, then part time casual contracting at a senior level. I have been able to remain as chair of a large NFP entity, and board member of another NFP. I went public soon after being diagnosed, but as a senior executive there was minimal risk of discrimination that others have faced. I took the opportunity to educate both senior and junior staff.

The most debilitating issues with regards to my working capacity are fatigue/lack of sleep, handwriting, anxiety and depression and speech and communication. I found meetings I chaired that were longer than 45 minutes were tiring, and took more effort to concentrate. It was more difficult if I did not eat and drink regularly, and worse late in the afternoon. I have found moving to part time hours as a contractor has led to less fatigue. Helpful strategies to stay in the workforce could include 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, a hands free phone and reduced hours. I took control of determining my work capacity and support requirements as a senior executive. As I was diagnosed relatively early (52), I did not require many interventions, and I already have the ability to change meeting times. I had a privileged position when diagnosed but it was important to inform my subordinate staff to explain minor tremors and change in handwriting. Notwithstanding, my supervisor’s first reaction was to expect me to retire whereas I was able to work full time till I turned 55. I did seek financial advice to understand my options. There is still a stigma that PD is an old person’s disease or it stops you from being productive. Tremor is the common outward sign but I was, and am, more impacted by non-motor symptoms.