- With an estimated 6 million people worldwide living with Parkinson’s, and nearly all experiencing their own version of the disease and its variability in symptoms, resources to help improve understanding of all aspects of Parkinson’s disease, including “off” time, are critical to manage Parkinson’s care and research
- New suite of free materials — available at michaeljfox.org/off —offers informative resources and practical tips for managing symptoms of “off” time for people and families living with Parkinson’s
NEW YORK (September 14, 2021) — Today, The Michael J. Fox Foundation for Parkinson’s Research (MJFF) launches a new suite of free educational materials for people and families living with Parkinson’s disease (PD). These new resources, available at michaeljfox.org/off, focus on “off” time, periods when Parkinson’s symptoms return because medication isn’t working optimally, something that not every person with Parkinson’s will experience, but an estimated 40 to 50 percent of patients develop within two to three years of starting the gold standard PD therapy, levodopa. “Off” periods can greatly impact a patient’s quality of life, by limiting their ability to complete daily tasks and adding uncertainty to their day. This variability in episodes often causes difficulty for patients and families to interpret back to their doctors.
New Interactive Resources on “Off” Time Answers Common Questions for Patients and Families
The new suite of materials offers tips on managing “off” time and Parkinson’s care with medical commentary written by MJFF Senior Vice President of Medical Communications and movement disorder specialist Rachel Dolhun, MD. Additionally, the resources were designed to include personal reflections and anecdotes from people living with Parkinson’s who experience “off” time.
“My ‘off’ episodes are extremely variable,” said Margaret Sheehan, 62, of McLean, Virginia and member of MJFF’s Patient Council. “Sometimes I feel my medications slowly draining out of me, and sometimes it feels like a switch has flipped, shutting me down almost instantly. People living with Parkinson’s and their loved ones hold a critical value in providing our lived experiences with this disease. Resources like these help patients and loved ones better understand our symptoms and provide strategies to voice our most bothersome aspects of the disease.”
In this informative interactive suite of materials, patients and families can find:
- Understandable first-hand patient insights on breaking down the complex topic of what is “off” time;
- Video and podcast resources featuring leading Parkinson’s experts answering common questions around the variability of these experiences;
- Practical tips and strategies to manage “off” time and speaking with your doctor about finding the right medication regimen; and
- Information on the latest treatments and those in the research pipeline.
“'Off' times are different for different people. In some, they can significantly impact daily activities. The uncertainty around "off" time can limit spontaneity and social interactions, too, said Rachel Dolhun, MD. “MJFF’s latest resources provide information about the common but sometimes misunderstood experiences of "off" time in Parkinson’s, to help people living with PD and their loved ones feel empowered to learn more and take action in their care.”
The free resources are available to view at michaeljfox.org/off. A webinar on this topic, featuring Parkinson’s community members and experts, also will be available on Thursday, September 16. Register for the free webinar here.
These resources were made possible by select members of our Parkinson’s Disease Education Consortium, including Acorda Therapeutics and Amneal Pharmaceuticals. Funding from our industry partners allows the Foundation to maintain editorial oversight in the creation of high-quality educational resources, while directing donor-raised dollars toward critical research.
Empowering Patient-Physician Communication Is Critical to Parkinson’s Research and Care
Today, an estimated 6 million people worldwide live with Parkinson’s, each experiencing their own version of Parkinson’s and its symptoms. With a highly variable disease and progression, resources to better understand and navigate fluctuations in the Parkinson’s journey are urgently needed. Although not everyone with Parkinson’s experiences “off” time, those who do often find it difficult to explain and interpret the variability in their symptoms with their doctors. Through MJFF’s online clinical study, Fox Insight, researchers surveyed 2,000 people with Parkinson’s to understand the unique experiences of “off” time. Researchers found that some patients had trouble explaining their symptoms and nearly half described bothersome symptoms that would be missed by standard assessments conducted by doctors. The three most common of these were freezing of gait, apathy and memory problems.
Since inception in 2000, MJFF has directed its funding to work urgently toward cures — treatments to slow or stop overall disease progression and with it the many symptoms Parkinson’s can bring. Additionally, since 2014, the U.S. Food and Drug Administration (FDA) has approved 17 new Parkinson’s therapies — two of which are Parkinson’s treatments funded by MJFF to help treat “off” episodes, Kynmobi from Sunovion Pharmaceuticals and Inbrija by Acorda Therapeutics. Today, there are more than 30 other potential therapies advancing through clinical trials thanks to Foundation funding.
MJFF is dedicated to creating educational resources and onramps for the Parkinson’s community and to helping patients and families better understand their role in speeding research. Participants in MJFF’s landmark Parkinson’s Progression Markers Initiative (PPMI) are helping scientists better understand Parkinson’s biology and experience. The study is now open to anyone over 18 living in the United States. Learn more and take a short survey to get started at michaeljfox.org/ppmi. And Fox Trial Finder, MJFF’s online clinical study matching tool that connects volunteers with recruiting studies in their area, lists more than 425 studies investigating Parkinson’s disease, including “off” time.
About The Michael J. Fox Foundation for Parkinson's Research
As the world's largest nonprofit funder of Parkinson's research, The Michael J. Fox Foundation is dedicated to accelerating a cure for Parkinson's disease and improved therapies for those living with the condition today. The Foundation pursues its goals through an aggressively funded, highly targeted research program coupled with active global engagement of scientists, Parkinson's patients, business leaders, clinical trial participants, donors and volunteers. In addition to funding $1 billion in research to date, the Foundation has fundamentally altered the trajectory of progress toward a cure. Operating at the hub of worldwide Parkinson's research, the Foundation forges groundbreaking collaborations with industry leaders, academic scientists and government research funders; increases the flow of participants into Parkinson's disease clinical trials with its online tool, Fox Trial Finder; promotes Parkinson's awareness through high-profile advocacy, events and outreach; and coordinates the grassroots involvement of thousands of Team Fox members around the world. For more information, visit us at www.michaeljfox.org, on Facebook, Twitter, Instagram and LinkedIn.
The Michael J. Fox Foundation