No matter how long you’ve known Parkinson’s disease (PD), you’ve probably come across words like “off,” “on,” dyskinesia and others. These describe certain Parkinson’s experiences. Knowing how they apply to your PD may help you better understand treatment options and guide care decisions.

Defining Common Parkinson’s Terms
 

• “Off” time: when Parkinson’s symptoms happen.   
  “Off” can include motor (tremor, slowness, stiffness) and/or non-motor (anxiety, mental fog, sweating) symptoms. Not everyone gets “off” time and it looks different in different people. It can happen in the morning, before the first medication dose, or during the day, between medication doses. It can come on gradually or suddenly and unexpectedly.  

For more information and tips about “off” time, visit our webpage.
  

• “On” time: when Parkinson’s symptoms are under good control.  
  This is when you have little or no symptoms.  

• Dyskinesia: involuntary movement. 
  Dyskinesia is extra movement, such as twisting and turning of a hand or leg, or back and forth movement of the head or upper body. If it happens, it’s most often during “on” times. But some people have dyskinesia during “off” time, too.  

• Dystonia: muscle cramping.  
  Dystonia is an intense, often painful, muscle contraction that pulls a body part into an unexpected position. It could turn your foot inward, curl your toes under, or tilt your head to the side. If it happens, dystonia most often occurs during “off” time.  

Describing Your Parkinson’s

These terms are not meant to replace how you talk about your symptoms. In fact, doctors want to hear about your experience in your own words. Rather than saying, “I have dyskinesia,” for example, consider something like, “About 45 minutes after I take my medication, my upper body starts swaying and this goes on for about an hour. It makes it tough to…”  

Keeping a log for a few days or weeks can help you see how medication is (or isn’t) working and show patterns. Track your symptoms, when they come on, how long they last and when you take medication. (You can use a notepad, worksheet from your doctor, or online or smartphone app.) You might notice that “off” time comes on consistently about an hour before your next medication dose is scheduled or that it’s random and unpredictable. Or you may note dyskinesia at the same time each afternoon or after each medication dose.  

Understanding Treatment Options

This information helps you and your doctor adjust medications. Someone with a lot of “off” time, for example, may need more and/or different PD medications, whereas someone with dyskinesia may need less and/or different medication. A person with occasional “off” time may want an as-needed medication on hand.  

There are many treatment options, several of which gained approval in recent years. The variety of PD medications work in different ways. Some temporarily replace or boost dopamine, the brain chemical that goes missing in Parkinson’s. Others work on different brain chemicals or pathways to ease symptoms. You can take some on their own while others work best in combination. Learn about Parkinson’s medications.

Finding the right medications and the right balance — to control symptoms without causing dyskinesia or side effects — can take time. It also takes close communication and a strong partnership with your doctor. Read more.  

These educational resources were made possible by select members of the Parkinson’s Disease Education Consortium, including Adamas Pharmaceuticals, the maker of Gocovri. Partner support allows us to furnish high-quality educational content to the Parkinson’s community while maintaining our commitment to allocate donor dollars to high-impact research. The Michael J. Fox Foundation is solely responsible for the content in these resources.