Editor's Note: For more Foundation news and research updates, read the Fall/Winter 2018 edition of The Fox Focus, our biannual newsletter.
"Off" is a term doctors and researchers use frequently in Parkinson's care and research. But people with Parkinson's disease (PD) may be less familiar with this term or what it means for them.
"Off" is time when Parkinson's symptoms -- motor and sometimes non-motor -- return, often because medication isn't working optimally. Not everyone experiences "off" time, but it's more common when taking levodopa for longer periods. "Off" can come on in various ways: when you wake up, before you take your morning medication, or throughout the day. When "off" happens during the day, symptoms can reemerge gradually before the next dose of medication is scheduled, or suddenly and randomly.
Defining "off" time
"Off" involves a person's usual symptoms, so these times look different in each individual. For some, "off" might be painful cramping and inward turning of the foot (dystonia) that interferes with morning routines. For others, it could be a mild but increasing tremor an hour before each dose of levodopa is due. Still others may have unpredictable "off" episodes of slowness and stiffness that make it difficult to move. Many recognize the movement symptoms (tremor, slowness, stiffness, walking/balance problems) that can occur, but fewer are aware that "off" also can bring non-movement symptoms. Feelings of anxiety, mental fogginess and profuse sweating are common.
This variability makes it difficult not only to interpret your experiences but also to relay them to your doctor. To improve doctor-patient communication and "off" treatment, MJFF-supported researchers are comparing how doctors, patients and care partners talk about these periods.
Treating "off" time
Treating "off" begins with looking at how you actually take your medications (not just how they're prescribed). Taking levodopa doses later than scheduled or skipping them can lead to "off." (Setting an alarm may help.) Combining levodopa with meals, especially high-protein foods, also can contribute to "off." If you take medication on time and separate from meals, your doctor may adjust medication dose or timing (increasing levodopa to four times a day from three, for example, if your symptoms come back throughout the day) or add medication.
Improving "off" medication
For unpredictable "off " times, doctors also may prescribe an apomorphine injection (a drug that works like dopamine, the brain chemical that goes missing in PD) to use as needed. This is currently the only available on-demand therapy for "off." But two new MJFF-backed therapies, under U.S. Food and Drug Administration review at the time of this writing, may soon expand options. A reformulation of apomorphine -- an under-the-tongue dissolvable strip -- and a levodopa inhaler may offer novel solutions to treat "off" as needed, in addition to scheduled medications. If approved, these drugs would provide new routes to rapidly reverse symptoms, addressing "off" more broadly in a potentially wider population of people with Parkinson's.
Watch our on-demand webinar in which panelists discuss "off" episodes and how to manage them.