”Off” Time in Parkinson’s Disease

“Off” time is when Parkinson’s symptoms — motor and/or non-motor — return or worsen between medication doses. Not everyone experiences “off” time, but it is more common the longer you live with Parkinson’s, the longer you take Parkinson’s medications and the higher the dose of medication.

Doctors and researchers use the term “off” in Parkinson’s care and clinical trials, but people with Parkinson’s may be less familiar with this term or what it means for them. Understanding “off” time can help you better manage Parkinson’s, in partnership with your care providers.

Movement disorder specialist Rachel Dolhun, MD, DipABLM, talks with MJFF Board Member Jeff Keefer, who was diagnosed with Parkinson’s disease (PD) in 2007, about managing “off” time. This excerpt is from a 2020 Ask the MD video.

Understanding “Off” Time

“Off” time may occur at different times and in different ways. It might happen in the morning, before the first dose of medication. Or it can happen during the day, between scheduled doses of medication. (This is called “wearing off.”) It may even happen unexpectedly or unpredictably. “Off” time can come on gradually or suddenly.

Because everyone’s Parkinson’s is unique, “off” time varies from person to person. Examples of “off” could include:

• stiffness and foot cramping, known as dystonia, often in the morning;
• a gradual return of tremor and feeling of anxiety before the next dose of medication;
• unpredictable, sudden episodes of difficulty moving.

To help you and your doctor better understand your “off” time, it may be helpful to keep a log for a few days or weeks. Track your symptoms, how long they last, how and when they come on (slowly or suddenly, for example), along with when you take medication. This might show patterns and potential triggers that can help guide treatment.

Click here to find out more about managing ‘off time’ from The Michael J. Fox Foundation for Parkinson’s Research.