Blog Archives: Living with PD

ADA Turns 25: Reflecting on How the Americans with Disabilities Act Protects the PD Community

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 Read More

One in 43 Million: What Can PD Caregivers Learn from AARP’s Report?

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 Read More

From Baltimore to India: Visiting Nurse Notes with Alpa Uchil, M.P.H., R.N.

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 Read More

Walking Over Water for Parkinson’s: Q&A with Nancy Redkey

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 Read More

From Diane: It’s Our Time to Speak Up

Which part of living with Parkinson’s disease should be the priority for scientists to study? For Diane Cook the answer is: cognitive issues. She submitted her answer through the Second Annual PDF Community Choice Research Awards survey. Now she is urging you to share yours by Thursday, April 30. Diane worked closely with PDF to develop the first Community Choice Research Awards survey last year, which are a “people’s choice” for PD research grants. The ProjectSpark Foundation run by Diane’s children donated funds for the awards. Hear from Diane about why the “people’s choice” awards are critical for PD research, why she… read more Read More

Taking Parkinson’s Day by Day: A Q&A with Artist Wendell Lowe

A picture is worth a thousand words — that’s how the old saying goes. And this has certainly been the case for Wendell Lowe’s photograph, “Day by Day.” His image, which appears in the month of April in PDF’s 2015 Creativity and Parkinson’s Calendar, speaks volumes through an artistic depiction of a simple everyday item — the pillbox. What does the pillbox image mean to you? For many people — not only those affected by Parkinson’s, but also for anyone who has experienced a serious illness or cared for aging parents, it so quickly speaks volumes. Without any words, we see, hear and remember everything the… read more Read More