I work 15hr shifts and sleep in the truck as I deliver all over the state. I am having problems with having to stop too many times and taking longer to complete certain tasks in the morning and late at night. I was diagnosed just over two years ago but had symptoms up to two to three years prior. It’s getting tougher by the day. I am still working but I’m not sure for how long. To start with my employer was supportive, but that changed when it started to slow my work on my off days. The most debilitating issues with regards to my working capacity are slowness of movement, fatigue/lack of sleep, muscle stiffness/rigidity, constipation and bladder control and pain. Mornings and trying to sleep at night are the most difficult times. Mornings as I have back pain that takes a while to settle and my bowel and bladder problems are an issue. Enhanced employer understanding of the impacts of young onset Parkinson’s could be helpful to support me to stay in the workforce longer.

When I was first diagnosed, all they wanted was a letter to cover them in case of an accident. I need a letter every 12 months or I get stood down. They put me on a different route/job but this was made clear it was not for my benefit as I had a couple of work injuries. Disclosing my condition to my employer helped me when scheduling was to change as my neurologist advised against the change to night shift due to the effect on medication. I think everyone thinks of the motor symptoms but its the non motor symptoms that are a major part of young onset as these are things people assume are old people problems. I am about to seek advice about my rights as an employee, as they are very critical at the moment of my work. As my job is handling dangerous goods I realise the risk my condition adds to the task, and understand there will be a time in the not too distant future when I’ll have to step away from work. I have been with this company for 12 years.