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 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 2 to 3 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, a media release from the Michael J. Fox Foundation for Parkinson’s Research explains.
Answers Common Questions
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. 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.”
— Margaret Sheehan, 62, of McLean, Virginia and member of MJFF’s Patient Council
Informative and Interactive
In this informative interactive suite of materials, patients and families can find:
- Understandable firsthand 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. 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.”
— Rachel Dolhun, MD
For more information, visit Michael J. Fox Foundation for Parkinson’s Research.
[Source(s): Michael J. Fox Foundation for Parkinson’s Research, PR Newswire]
More OFF Time and Dyskinesia Education Needed, Survey Suggests