In this Q&A, Anne Newbould, a care partner to her husband with PD, shares her experience being involved in the PDF Community Choice Research Award. Last year, when PDF launched the award by asking, “what is the most pressing question for scientists to solve in PD?” she answered: fatigue. Her research priority was selected from amongst hundreds of submissions. This week, to address the symptom she helped to identify, PDF is bringing together experts and advocates in Chicago, IL.
Q. What motivated you to submit your research idea for PDF’s Community Choice Research Award?
A. My husband of over 40 years, James, has been living with Parkinson’s since 2009. As the care partner for the love of my life, I’m always going to do whatever it takes for him. I got so excited when I found PDF’s survey last year that asked the patient community, “what is the most pressing question for scientists to solve in Parkinson’s?” For the first time, I felt I could shed light on fatigue, one of the ‘invisible’ symptoms of Parkinson’s, which impacts so many of our loved ones. You have to start somewhere when you want something to change and what better place to start than by working with PDF?
Q. Why is fatigue your research priority for Parkinson’s scientists?
A. I’ve seen firsthand the devastating effects of fatigue in Parkinson’s disease. My husband was the type of person that was always “go, go, go,” from leading a ministry to co-owning our scuba diving business together. After his diagnosis and retirement, it was very concerning to watch him go from being 100 percent active, to not wanting to get out of a chair in the morning.
Though fatigue affects more than half of people living with Parkinson’s disease, it can often be overlooked or untreated. I have a background as a medical language specialist and am seeing this from all angles. But the average person may not be told that fatigue is part of Parkinson’s disease. I want to make sure that people understand that fatigue in Parkinson’s is very real and needs to be addressed.
Q. What does it mean to you to have your idea selected for the PDF Community Choice Research Award?
A. I am grateful for PDF’s continued efforts to involve people with Parkinson’s and their care partners like me in research. Having my idea selected for PDF’s Community Choice Research Award is like a breath of fresh air, because it offers hope not only to my husband, but everyone else touched by this symptom. I am encouraged by the opportunity to work with PDF and leading experts in the field to find solutions for fatigue in PD.