Blog Archives: Living with PD

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

Gil & Kirk Agree, Palliative Care Should be
Priority for Researchers

Which question about living with Parkinson’s is your priority for scientists to answer? For PDF Research Advocates Kirk Hall of Denver, CO, and Gil Thelen of Tampa, FL, the answer is: understanding how palliative care can help people with PD. Gil and Kirk separately completed PDF’s six-question survey as part of the Second Annual Community Choice Research Awards. It turns out that they chose the same topic. We interviewed them to find out why studying palliative care is so important.

Hospice and Parkinson’s and The Changing Conversation About End of Life

In the past year or so, PDF has seen an increasing number of articles broaching the topic of end-of-life planning — how to talk with a person about his or her care, the role of the family, whether drastic life-saving measures should be taken and whether it is preferable to spend those last days home or at the hospital. Just this week, Barron H. Lerner, M.D., was the latest to weigh in on the topic of end of life with his piece, Overruling My Father, appearing in the New York Times. Dr. Lerner, a physician at NYU Langone Medical Center,… read more Read More