What happens when thousands of people touched by Parkinson’s disease get together? That’s exactly what’s happening at the 4th World Parkinson Congress (WPC) in Portland, OR, where a record 4,500 people PD, care partners, researchers, and health professionals from around the globe have gathered to advance treatments and a cure.
The answer? A lot happens. The WPC is chock full of educational seminars, scientific sessions, roundtables, poster presentations, music performances, exercise, yoga and more. The hardest part is choosing where to go. Here’s an update on what the PDF team saw and did on day 2 (Wednesday).
PDF Patient Leaders Lead the Way
On Wednesday, two of PDF’s volunteer leaders took leadership roles at the congress.
Julio Angulo, Ph.D., a member of the PDF People with Parkinson’s Advisory Council session led a roundtable session entitled, “Shame and PD: How to recognize it and help fellow People with Parkinson’s can conquer.”
Rebecca “Becca” Miller, Ph.D., (left) also a member of the PDF People with Parkinson’s Advisory Council, Co-Chaired a session called, “Pathology and Mechanisms of Cognitive Deficits in PD,” which included three scientists who discussed how we can better understand and solve cognitive changes in Parkinson’s disease.
Nonmotor Symptoms Strike a Chord
Our team stopped by a few scientific sessions. We saw a recurrent theme: discussions surrounding the debilitating impact of nonmotor symptoms of Parkinson’s, including fatigue, pain and sleep difficulties, and the need for ways to better treat them.
- A big crowd gathered for a three-part talk, “Nonmotor symptoms: addressing unmet needs.” Ray Chaudhuri D.Sc., M.D., shared some stunning facts, noting, “In one study, we found that only 2.5 percent of people with Parkinson’s are completely free of nonmotor symptoms,” which means the majority are affected. He also noted that many people with PD rate their nonmotor symptoms as more disabling than movement symptoms. Ron Pfeiffer, M.D., continued the session noting that in one study, 33 percent of people with PD identified a particular nonmotor symptom — fatigue — as their worst PD symptom, while 58 percent ranked fatigue as one of the three most disabling nonmotor symptoms in PD. (This may be why, in PDF’s last round of Community Choice Research Awards, the community asked us to fund research into fatigue, learn more about that here).
- In related news, Terry Ellis, P.T., Ph.D., N.C.S., (who is involved with our new Physical Therapy Faculty Program) was part of a session on speech, physical and occupational therapies. When talking about ways to manage gait and walking difficulties in PD, she mentioned that nonmotor symptoms like anxiety and depression may have an impact on gait. Could managing nonmotor symptoms also help motor symptoms?
- Nonmotor symptoms continued to play a major role when it came to the PDF Community Choice Research Awards, which ask the community to help us choose the most important topics for research. (Voting is still open). The answers on day #2 (see photos above right from PDF Advocates Sharon Krischer and Luann McVey) trended toward nonmotor symptoms like sleep, anxiety and pain.
Stay tuned for further reports. In the meantime, learn more about nonmotor symptoms by viewing a PDF online seminar led by Dr. Chaudhuri available on our website here.