What People With Parkinson’s Disease Really Want

Nov. 15, 2015

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-treatedsymptoms 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.

What’s Most Important to People With Parkinson’s?

These people’s choice awards for Parkinson’s provide a simple solution to a complex problem — ensuring that research done by scientists focuses on the issues that are of greatest concern to people living with Parkinson’s. The scientists who study Parkinson’s are a dedicated and talented group, but their work can benefit from the insights from the other experts — those living with the disease 24 hours a day, seven days a week. Our solution was simply asking those who live with the disease, “What is most important to you?”

When Ann answered this question in 2014 along with 300 others in the first Community Choice Research Awards survey, it was clear that aspects of the disease viewed by people living with Parkinson’s as most important to solve (in addition to the long sought-after cure) differed from the aspects most researchers are studying, such as tremor and the dyskinesia. In fact, survey respondents often chose non-motor or hidden symptoms, such as fatigue, as those that have the biggest impact on quality of life. Yet these symptoms are under-studied.

The first round of Community Choice Research Awards were so successful that PDF called upon the Parkinson’s community again in 2015 to help us do a better job aligning the scientific goals of researchers with those of people living with disease. Once again, the responses provided a wealth of information.

The insights demonstrate how simply asking people with Parkinson’s disease their priorities can drastically alter what we know about their disease and how it is treated. Take cognitive decline and apathy for example:

“Apathy is my priority for researchers because it is so vital to quality of life. After my own diagnosis of PD, if I were left alone without a goal, without support and without encouragement, I might have simply sat on the couch, reading and watching TV, while life went on around me. Fortunately, once I understood that apathy is a common symptom, and decided to combat my own apathy, it became easier to recognize it and to overcome it — but we need to know more.”  — A.C. Woolnough

“Every person with Parkinson’s fears the threat of cognitive impairment. If you can’t count on your brain to support you the way it always has, you feel like you have lost some of yourself. We need to know if there are things we can do to keep our brains as healthy as possible. We know exercise is important. But, are cognitive exercises also helpful?” —Diane Cook

The result of our “people’s choice” awards is that the disconnect between what matters to patients and what is studied by scientists is now smaller. One wonders how much further along we would be in both the knowledge and treatment of diseases like Parkinson’s if we employed this model years ago. Would we have known much sooner that Parkinson’s is more than a movement disorder? Would we have understood that the non-motor symptoms can have more devastating consequences on people’s’ lives?

In the words of Diane: “I remember when Parkinson’s used to be called just a movement disorder … until patients spoke up about the many non-motor symptoms they were experiencing. Now Parkinson’s is classified as a multi-system disorder. Neurologists used to say that pain was not associated with Parkinson’s … until patients convinced them it was.”

Diane sums it up well. In the past 15 years, it was because of patients and caregivers that we have come to understand Parkinson’s for the multi-faceted and complex disease that it is. Now let’s take it a step further. Let’s make sure that patients and caregivers, just like Ann and Jim, have the chance to help us cure it.

http://www.mymedclinic.info/2015/11/16/what-people-with-parkinsons-disease-really-want/