Kirk Hall (back row, middle) & Gil Thelen (second from right) at the PDF Conference on Palliative Care.
As part of our scientific funding, the Parkinson’s Disease Foundation (PDF) is investing more than $90,000 in Conference Awards in 2015.
Through this program, we fund gatherings of experts to address unsolved questions in Parkinson’s, such as, “how can we improve palliative care in Parkinson’s at every stage of the disease?”
In October, we hosted a conference to answer this question. Led by Benzi Kluger, M.D. of the University of Colorado, it included a global group of scientists, doctors, health professionals and PDF Research Advocates Kirk Hall of Denver, CO, and Gil Thelen of Tampa, FL. Below, Kirk and Gil report back on what happened and what can be done to improve palliative care for people with PD.
I’m a scientist and a doctor. Because of funding from the Parkinson’s Disease Foundation, I’m spending my career as a member of the team ending PD. But we need your help.
As a young neurologist, PDF’s investment in my two-year fellowship — and its annual investment in my fellow research leaders in the amount of $4.6 million — enabled me and others to join the team fighting PD. But we need your donation to help us meet our goal of ending the disease. When you donate by Thursday, December 31st, your donation will be doubled by the PDF Board of Directors and friends for up to $500,000!
As November draws to an end and December peeks around the corner, I feel compelled to lift my head above the daily grind and take stock of life.
Because despite Parkinson’s disease, I live a rich and full life. Some blessings come to mind:
You may have noticed that PDF has opened up applications for individuals interested in joining our People with Parkinson’s Advisory Council. Our members, all people living with PD and care partners, are driving PDF’s goal of ending Parkinson’s disease.
Each member has made unique contributions to PDF’s work to mobilize leaders in science, health care and the patient community to work together toward a cure.
How do they do it? Here are four ways:
November is recognized as National Hospice and Palliative Care Month. Is there a difference between the two?
Yes — palliative care is specialized medical care that focuses on providing, “relief from the symptoms of stress of a serious illness,” as PDF Research Advocate Kirk Hall explained in an earlier blog. Although often mistaken for end-of-life care, the definition of palliative care is actually very broad. On the other hand, hospice care is designed to improve quality of life through pain relief and symptom management for individuals facing end-of-life. It is important to understand the difference between the two types of care, and how both can benefit people with Parkinson’s disease.
How can we improve hospital care for people with Parkinson’s disease (PD)? When people with Parkinson’s visit the hospital (usually for a non PD-related health condition), they can experience longer stays and more often need rehabilitation than those without the disease.
One challenge facing the health professionals responsible for care is the need for updated information on Parkinson’s disease. Luckily, Gerry Altmiller, Ed.D., A.P.R.N., AC.N.S.-B.C., an alumni of The Edmond J. Safra Visiting Nurse Faculty Program (EJS-VNF) at the Parkinson’s Disease Foundation (PDF), is helping to make that happen.