What People With Parkinson’s Disease Really Want

Two years ago, Ann Newbould sat in her living room, in despair over her husband’s fatigue. It wasn’t just that he was tired — it was much more than that. Ever since Jim — a former athlete, scuba diver and business owner — was diagnosed with Parkinson’s, he seemed to have extreme fatigue that kept him (and Ann) from the things they loved. Should they revisit the neurologist? Should they see another specialist?

How exactly could they solve this problem?

Fast forward to April 2015: Ann is sitting at a table with the world’s leading neuroscientists and Parkinson’s disease neurologists describing Jim’s fatigue. They are listening intently as she describes Jim’s experience and provides input on ways to solve this debilitating symptom that is experienced by more than half of people with Parkinson’s. Ann is no longer one of millions of care partners silently struggling with how to best to help a spouse manage an “invisible” symptom of Parkinson’s that is rarely on the radar of the scientific community. She is now a research partner, working on scientific studies with experts who want to understand fatigue and several other common, but under-recognized, difficult to diagnosis, and — tragically — under-treated symptoms of Parkinson’s disease.

What propelled Ann from care partner to research partner? How was she able to get hold of the world’s leading scientists and suggest their next research project? She simply filled out three questions and clicked “Submit” on the website of the Parkinson’s Disease Foundation (PDF). Her submission was chosen amongst 300 responses for funding as part of PDF’s “people’s choice” award of Parkinson’s research, called the Community Choice Research Award.

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