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Four Ways People with PD Are Guiding Our Work to End PD

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:

The Myth of Palliative Care

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… read more Read More

Improving Hospital Visits with PD: Visiting Nurse Notes with Dr. Gerry Altmiller

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.

Thanking PTs: National Physical Therapy Month

Has a physical therapist helped your life with Parkinson’s disease (PD)?  This month, we join with the American Physical Therapy Association (APTA) in recognizing National Physical Therapy Month, which thanks physical therapists and physical therapy assistants for their efforts to help people to improve and restore movement. For many people with PD, physical therapy is an important part of their treatment plan, and their physical therapist is an important member of the health care team.

DBS in Primetime: NatGeo to Air Brain Surgery Live This Sunday

Have you or has a loved one undergone deep brain stimulation surgery for Parkinson’s disease (PD)? Would you undergo the surgery on live television? That’s what is happening on Sunday, October 25 as deep brain stimulation surgery for PD makes its primetime debut on the National Geographic Channel at 9:00 PM ET. Greg Grindley, a 49-year-old father of four living with young onset PD, will undergo the procedure at University Hospitals Case Medical Center in Cleveland, OH, as cameras roll and viewers at home get an up-close look at the brain in real-time.

Triathlon for Dad: A Q&A with Mark Macenas

What sparks a PDF Champion’s desire to complete a triathlon for Parkinson’s research? For Mark Macenas of Durham, NC, who completed the Wilmington Sprint Triathlon on September 19, it was watching his dad’s fight with Parkinson’s disease. And for this avid athlete, the 1,500-meter swim, 12-mile bike ride and 5K run weren’t challenging enough. Mark, a firefighter and EMT of more than 14 years, also wore his full firefighting gear (decked out in PDF stickers) for a portion of the race. Mark has since raised more than $2,200 for PDF.