I’d like employers to know that I’m different but I’m the SAME. I can’t but I CAN. I might appear slightly different and struggle with some tasks but with a few modifications in my work environment I CAN continue to deliver the SAME high standard of work.  Enabling this does have to go beyond a quick disclosure discussion. It requires some investment in time and possibly cost, to create awareness amongst relevant staff within the organisation and to implement changes. But, it doesn’t cost as much as you think. There are organisations and government programs that can support you through this process and in the long run the benefits of retention will out weigh the costs. Businesses across the world quickly made changes to accommodate how they work with COIVD-19 to try and keep their workers employed. People with young onset Parkinson’s need to continue working. They still have families to support. You could make a few small changes to keep a person with young onset Parkinson’s employed. I continued to work for 2 years after my diagnosis, until it became too hard to hide my symptoms and work became quite stressful. The level of support I felt from employers varied between organisations.

One organisation was supportive but I don’t think they had a good understanding of the condition. The other organisation was very badly managed and made no adjustments. The most debilitating issues with regards to my working capacity were slowness of movement, muscle stiffness/rigidity, handwriting, anxiety and depression, speech and communication, tremor/Dyskinesia/Dystonia. Sometimes I am a bit slower towards the end of my medication dose. Strategies that may have been helpful to support me to stay in the workforce longer would be flexibility to work around fluctuating symptoms, enhanced employer understanding of the impacts of young onset Parkinson’s, the removal of specific tasks, a modified work space, writing aids such as voice-to-text software to reduce the need to type, a hands free phone, reduced hours, and the option to work from home. Since diagnosis, I worked in two organisations where I declared my condition.

The first organisation did participate in an assessment but they were slow to implement modifications, and in the end I ended up getting some assistance through Multiple Solutions. The second organisation didn’t ask me if I needed anything. I was in this role for 1 year. I struggled with some of the tasks and at the end of the initial contract period I left. I think a process to determine what supports you require is useful, and some of the equipment provided definitely helped. But, the system in 2016 was very long, complicated and seemed to be focused on physical symptoms (keyboard, speech etc). It didn’t discuss other aspects of the role such as presentations to groups which was challenging due to speech difficulties and anxiety. Assessments are important but they must be comprehensive. They need to cover all aspects if the job in relation to the symptoms that a person is experiencing. Also, it’s really important that assessments are revisited at regular intervals as the condition does change. It may even improve as the person’s medication is adjusted. I think in the long run, disclosure is better for both parties, but if employers don’t have access to good information and supports, disclosure won’t necessarily result in a good work environment. I didn’t seek advice about my rights as an employee, because I didn’t want create a “combative” environment. I wouldn’t want to continue working for an organisation that didn’t actively want to support me.

I think most employers know very little about young onset Parkinson’s so raising awareness of young onset Parkinson’s and employment that also met the needs of employers, for example something that outlines the employees rights and answers questions like:

  • “How do I conduct a workplace assessment?”
  • “How often should I do an assessment?”
  • “What kind of changes could I make?”
  • “Where can I get specialist equipment from?”
  • “Can I adjust the salary down in relation to the reduced responsibilities and deliverables?”