Do you think of yourself or your loved one as a “caregiver” in life with Parkinson’s disease? There are some people who identify with this term, but many others who do not, which is why when Rhona Johnson, a former member of PDF’s People with Parkinson’s Advisory Council (PPAC) coined the term “care partnership,” PDF thought it fit perfectly.
Have you picked up the latest issue of Family Circle magazine? If you flip to page 103, you will find a personal story about Parkinson’s disease written by Maria De Leon, M.D., a Research Advocate with the Parkinson’s Disease Foundation and former member of our People with Parkinson’s Advisory Council. For those of you who do not know Dr. De Leon, she is both a movement disorder specialist (a neurologist with specialized training in PD) and a person living with PD. Dr. De Leon’s story in Family Circle traces her journey with PD, from the confusion that arose over her diagnosis… Read More
How did you spend your summer vacation? John Creveling, a PDF Research Advocate from Philadelphia, PA, spent it sharing his story with the Parkinson’s disease community. At the beginning of the month, John’s story was featured in Neurology Now, a magazine widely featured in doctors’ offices and read by people living with Parkinson’s disease and other neurological diseases. Just a few days later, the Parkinson’s community voted for John’s photograph, Transformation, to be featured on the cover of PDF’s 2016 Creativity and Parkinson’s calendar. We sat down with John to hear about his own transformation into an advocate for Parkinson’s disease — one… Read More
A few months ago, the National Institutes of Health — the government institute that funds $26.4 billion in biomedical research each year — called for equal representation for females in scientific research studies … female mice, that is. Today, as we mark Women’s Equality Day, equality for mice (and human women) in scientific research might not be the first issue that springs to mind. But it is an important one. Why? Because when scientists test new therapies for diseases such as Parkinson’s, there are several steps to make sure they are safe and effective in humans. And experiments in mice… Read More
Why is it important to solve fatigue in PD? First, it is a debilitating symptom experienced by many people with PD; yet it is difficult to diagnose and treat. Perhaps more importantly, it is a symptom that people with PD and care partners told PDF was important when voting in the first Community Choice Research Awards survey. This past October, I was pleased to lead a PDF Conference on Fatigue in PD in Chicago, IL. Because this meeting and subsequent research were inspired by the community, my colleagues and I feel it is important to let you know what happened… Read More
Do you wish your health team understood the impact of your “invisible” symptoms — the ones that we cannot see, such as fatigue, sleep disturbances and pain? Susan LaRocco, Ph.D., of Curry College, an alumna of The Edmond J. Safra Visiting Nurse Faculty Program (EJS-VNF) at PDF, is helping to make that happen. In 2012, Dr. LaRocco completed our “train the trainer” program, which prepares nursing faculty in Parkinson’s disease so they can, in turn, prepare their students. Dr. LaRocco’s final research project for the program recently resulted in a published article, “Unmasking the Nonmotor Symptoms of PD,” in Nursing… Read More