u/ParkinsonsLifestyle

Hi everyone, I’m Bill.

I work in the Parkinson’s space supporting carers and families through Parkinson’s Lifestyle Management.

I’m trying to better understand what carers actually need, not what services think they need.

If you’re caring for someone with Parkinson’s:

What support do you wish you had more of?

What part of the day-to-day is the hardest?

Is there anything you feel like no one really prepares you for?

It could be emotional support, practical tools, dealing with family dynamics, navigating health systems, managing symptoms, or just coping with the load.

I’m actively building resources and I want them to be shaped by real experiences, not assumptions.

Appreciate anything you’re willing to share.

Thanks