Each year, nurses from all over the world come together at the annual Quality and Safety Education for Nurses (QSEN) Forum to share ideas to promote quality and safety in healthcare. This year’s forum in Bonita Springs, FL, from May 30 to June 1, shined a light on Parkinson’s disease (PD) and the work being done to improve care for people living with this challenging health condition.
Warning: This article contains adult-themed issues and terms.
A recent study by Inga and colleagues at the Mount Sinai Beth Israel Parkinson’s Foundation Center of Excellence in New York examined the incidence of Parkinson’s disease in inflammatory bowel disease patients.
Judy and Phil Bellenfant were energized to be in Washington, D.C. in March for the 2018 Parkinson’s Policy Forum and to meet with Representative Chuck Fleischmann (R-TN) in his Capitol Hill office.
And then, it snowed. It snowed so much that the federal government closed for the day and Judy and Phil couldn’t make it to the Hill. But there was no stopping the Bellenfants from making their voices heard.
People with chronic diseases such as Parkinson’s disease (PD) are at risk of spiraling into a demoralized state. Common symptoms include feeling helpless, hopeless, a sense of failure and incapacitated to respond to stressful situations. Doctors frequently fail to identify or address this issue. There is sparse research and a rare interest in screening for demoralization. In this month’s What’s Hot in PD?
Last week, 300 Parkinson’s disease (PD) advocates from nearly all 50 states convened in Washington, D.C. for the 2018 Parkinson’s Policy Forum. This annual event brings people with PD and their loved ones to our nation’s capital for two days of education and training followed by a day of advocacy action and engagement. Despite a snowstorm that closed Congress’ doors and shut down the streets of Washington, advocates made sure the Parkinson’s community was heard on Capitol Hill.
In this blog, Angie Hott discusses her work as a Parkinson’s advocate and her participation in the upcoming 2018 Parkinson’s Policy Forum, co-sponsored this year by the Parkinson’s Foundation and The Michael J. Fox Foundation. The event will take place March 19 to 21 in Washington, D.C. You can view a live stream of the Forum’s educational panels on March 19 and 20 by visiting the Parkinson's Foundation's Facebook page.
As people with Parkinson's and their loved ones know, you can, and often must, be your own best advocates. No one understands the ins and outs of Parkinson's better than those who are touched by the disease. On Wednesday, March 21, join members of our community for Parkinson’s Advocacy Day and tell your lawmakers what matters to you. By sharing your needs and priorities with elected officials on this day of action, you can play a critical role in shaping their decision-making.
Since 2011, the Parkinson’s Foundation has worked with the Parkinson’s community to address Medicare challenges related to services such as physical therapy, occupational therapy and speech-language therapy. In 2014, we advocated to remove the Improvement Standard, meaning that people with Parkinson’s could no longer be denied coverage for therapy solely for lack of improvement. Now, the Parkinson’s community can celebrate the next milestone in access to care for Medicare recipients.
Slow and steady weight loss is a known feature of Parkinson’s disease. Weight loss may initially be a positive and popular disease related feature. However, as patients dip below their ideal body weight, this may possibly impact quality of life and other outcomes (Akbar, 2015). In this month’s What’s Hot in PD?, we will discuss a recent article on weight loss in Parkinson’s disease.