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?
A few weeks ago, PDF staff and some of our volunteer Research Advocates attended a symposium that brings together scientists who are all focused on solving Parkinson’s disease: the 28th Annual Parkinson Study Group (PSG) Symposium in St. Louis, MO.
The theme of this year’s symposium was disease modification, finding ways to not only ease symptoms, but also to change the progression of the disease. This starts with basic research to better understand what causes Parkinson’s disease, and ends with clinical trials testing drugs or compounds to ease symptoms or, hopefully, prevent Parkinson’s in the first place.
A year or so after President Obama personally announced his signature initiative to create a public-private partnership to improve our understanding of the infrastructure of the human brain, the White House convened 250 of us to hear a report card and plans on progress to date.
I was invited — wearing my two hats as President of the Parkinson’s Disease Foundation and Chair of the American Brain Coalition — to attend the September 30 meeting, along with other leaders of the multi-million dollar effort, including those from the National Institutes of Health (NIH) neurology and mental health institutes, neuroscientists, industry reps, professional organizations and lay research advocates.
In this Q&A, Phil Myers shares his thoughts on volunteering as a PDF Research Advocate, and provides tips for individuals thinking of applying for a spot at our upcoming training for new advocates. Phil and his fellow 230 Research Advocates are part of PDF’s Parkinson’s Advocates in Research program.
Q. Why did you apply to the PDF Learning Institute?
A. A few years ago, my wife had passed away with a parkinsonism and I had recently been diagnosed with Parkinson’s disease. These experiences fueled my desire to be involved in medical research. But I didn’t have a medical background, so I wasn’t sure how I could contribute. All I knew is that I wanted to understand this disease and how I could help our country beat it.
The recent ice bucket challenge that has raised awareness and funds for ALS has been a huge success. What may have been overshadowed by this success is the reporting of the first solid estimate of how many people in the United States live with ALS – 12,187. It may seem like a small number but it helps many – from families to policy makers – understand what we are up against in solving that disease.
While the estimates of people living with Parkinson’s disease are much larger than for those with ALS, the fact of the matter is that our community does not exactly know the real number.
The following Q&A with Claire Berman, member of PDF’s People with Parkinson’s Advisory Council, discusses PDF’s PD ExpertBriefing: Occupational Therapy and PD: Tips for Healthy Living.
What role, if any, can an occupational therapist play in helping someone with Parkinson’s continue to enjoy a reasonable quality of life? A very helpful one, I learned from the PD ExpertBriefing led by Sue Berger, Ph.D. and Linda Tickle-Degnan, Ph.D. on September 9, 2014.