MJFF Offers Free Resources About ‘Off’ Time
The Michael J. Fox Foundation (MJFF) has released a new suite of free educational resources that focuses on so-called “off” periods when Parkinson’s disease symptoms reappear or worsen as medications wear off.
These new resources, available at michaeljfox.org/off, offer patients and their families tips for managing “off” time, and feature medical commentary written by Rachel Dolhun, MD, senior vice president of medical communications at MJFF and a movement disorder specialist.
Parkinson’s is caused by a lack of dopamine, a signaling molecule that sends messages between nerve cells. The gold standard of Parkinson’s treatment is levodopa, which is a molecule converted into dopamine and designed to lessen or slow the progression of symptoms. However, over time, medications like levodopa can lose effectiveness.
Up to 50% of patients develop “off” episodes within two to three years of treatment, which may include fluctuations in motor symptoms such as tremors or slowness in movement. This may limit the ability to carry out daily activities independently and adds uncertainty to the patient’s day.
“‘Off’ times are different for different people,” Dolhun said in a press release. “In some, they can significantly impact daily activities. The uncertainty around ‘off’ time can limit spontaneity and social interactions, too.”
“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 [Parkinson’s disease] and their loved ones feel empowered to learn more and take action in their care,” Dolhun added.
The high degree of variability in “off” episodes experienced by patients often makes it difficult for them and their families to communicate to their doctors adequately. Recently, the MJFF conducted an online clinical study — Fox Insight — that surveyed 2,000 people with Parkinson’s to understand unique “off” episode experiences.
The results revealed some patients found it challenging to explain their symptoms, and almost half reported troublesome symptoms that standard clinical assessments would miss. The three most common “off” episode symptoms reported were freezing during walking, memory problems, and apathy, or a lack of motivation.
MJFF’s new interactive resources include: first-hand insights by patients about simplifying the complex topic of “off” episodes; video and podcast resources with leading Parkinson’s experts who answer common questions concerning episode variability; practical tips and strategies to manage “off” times; and how to speak with doctors about appropriate medication regimens. Information about the latest therapies and those in the ongoing research pipeline also is included.
The suite includes personal reflections from people living with Parkinson’s who experience “off” periods.
“My ‘off’ episodes are extremely variable,” said Margaret Sheehan, 62, of McLean, Virginia, and a 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,” Sheehan added.
These new resources were facilitated by Parkinson’s Disease Education Consortium members, including financial support from Acorda Therapeutics and Amneal Pharmaceuticals, two companies developing and marketing therapies for Parkinson’s. This funding allows the MJFF to maintain editorial oversight when creating educational resources, while steering funds raised by donors toward future research.