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.
“Parkinson’s disease is a mimic. It is also a snowflake; no two incidents being identical in symptoms,” writes Gil Thelen, a PDF Research Advocate and longtime newspaper editor from Tampa, FL. With these words, printed last week as part of his Op-Ed, Mr. Thelen has proven how powerful a tool the pen can be in the fight against Parkinson’s.
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
Which question about Parkinson’s is your priority for scientists to answer? According to Cindy Bittker, M.S.W., a PDF Research Advocate from Hull, MA, the answer is: dystonia. As part of its Second Annual Community Choice Research Awards (open during April), PDF is profiling members of the PD community who have taken our survey to find out the priorities they suggest for scientists. The survey — open to people with PD and care partners until Thursday, April 30 — asks what is most important for researchers to study regarding specific aspects of the disease, including its symptoms, day-to-day management and treatment. Later in… Read More
Why does mom shuffle and stagger when she walks? What makes grandpa’s hand shake? Will grandma die of Parkinson’s disease (PD)? When there is a diagnosis of Parkinson’s disease in the family, these questions may be on everyone’s minds. If we imagine the experience through the eyes of a child, it is easy to see how such questions can be even more overwhelming.
Who’s talking about sex and Parkinson’s disease? Despite the challenges that some people with Parkinson’s face in regards to sexuality and intimacy (one study showed 87 percent of people with PD experience some sort of issue related to sexuality) the conversation on the topic has been sparse. That is why PDF hosted a webinar on the topic last September with Gila Bronner, M.P.H., M.S.W., C.S.T, which has been viewed by more than 2,000 people. And it’s why why we noticed last week when comedy writer Marc Jaffe published an essay published in the New York Times, Finding Equilibrium in Seesawing Libidos, covering… Read More