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
Would you like to share resources and tips for living better with Parkinson’s? If so, joining a support group is one option to consider. For some people with Parkinson’s, support groups can be wonderful sources of information and social and emotional support. You may be wondering how to find a support group or, if there isn’t one nearby, how to start one yourself. Our team at PDF is here to help.
Parkinson’s may limit some physical abilities, but it should never take away a person’s right to live well. Thanks to the Americans with Disabilities Act (ADA), it is much less likely to do so. As we mark the 25th birthday of the ADA — which was signed into law by President George H.W. Bush, on July 26, 1990 — we revisit why it is important for the PD community, including how it can protect you and your family and how to contact PDF for help if it doesn’t. The ADA is a civil rights law that prohibits discrimination based on… Read More
Are you a care partner to someone living with Parkinson’s? You are not alone. In fact, PD care partners may have some experiences in common with 43 million other Americans who also help to care for loved ones. This information was shared last week, when the AARP joined with the National Alliance for Caregiving to report on the state of caregiving in the US. Together the groups reported on results from a nationwide survey which included responses from 1,250 caregivers who specifically care for adults living with a variety of illnesses such as cancer and Alzheimer’s disease. What did we learn… Read More
How are we preparing the next generation of nurses to care for the growing population of people with Parkinson’s? The alumni of The Edmond J. Safra Visiting Nurse Faculty Program (EJS-VNF) at PDF are doing their part. Alumni of the program, such as Alpa Uchil, M.P.H., R.N., a nurse at The Johns Hopkins University (JHU) School of Medicine, undergo the “train the trainer” curriculum, so that they can, in turn, educate their nursing students. We sat down with Ms. Uchil, who completed the program in 2014, to understand her work in Parkinson’s and how the EJS-VNF program has made an impact. She’s… Read More
Last Sunday, the Parkinson’s Disease Support Group of the Mid-Hudson Valley, Inc., hosted their fifth annual Walk Over Water in Poughkeepsie, NY, to benefit the Parkinson’s Disease Foundation. More than 150 people attended, bringing the walk’s five-year fundraising total to $80,000. Not only that, the event continues to garner greater support from the community, including businesses and government. This year, NY State Senator Sue Serino joined to declare April as Parkinson’s Awareness Month, along with County Executive Marc Molinaro. How do they do it? Read our interview with group leader Nancy Redkey, as she reflects on the annual walk, what inspires her to make… Read More