“My collections are inspired by beauty and science, neuroscience to be exact,” says Emily Alice Ball.
A jewelry designer from the UK, Emily Alice’s collections are uniquely named and categorized … according to science. For instance, there’s the oxytocin and the serotonin collection, and then there’s adrenalin. And most importantly during April … there’s dopamine. Dopamine is the neurotransmitter in the brain that helps with movement and coordination. It is also the one that is lost in Parkinson’s disease.
Three years ago, Emily Alice, whose friend and customer lives with Parkinson’s disease, came to PDF with a creative idea for Parkinson’s Awareness Month. During the month of April, she would donate a portion of proceeds from the dopamine jewelry collection to PDF.
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, who is perhaps best known for his authorship of “The Breast Cancer Wars,” turns his attention to Parkinson’s disease. And he reveals his and his mother’s decision, based on his father’s previously-expressed views, to choose hospice for the end of his father’s life. (He reports that his father, Dr. Philip Lerner, passed away in hospice in 2012.)
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 2015, PDF will select two community priorities to be studied with $15,000 grants.
See our interview with Cindy and be sure to share YOUR PD priority by Thursday, April 30!
Two weeks ago, I sat in the back of a conference room in New Jersey, watching events unfold at PDF’s most recent Parkinson’s Advocates in Research Learning Institute, as I have for the past seven years. For the eighth year in a row, we were prepping a group of people with PD and care partners to understand the research process and how they can pair up with researchers to improve it.
As I sat there, planning details for the next day and ways to make the training better, I looked up and it hit me – it is working.