On and Off

who have had Parkinson’s for some time can notice big differences between how they move at different times of day. Sometimes the words “on” and “off” are used to describe different states. “On” is when someone’s medication has kicked in, their symptoms are reasonably well controlled and they are functioning at their best. “Off” is when the tablets have worn off and symptoms return. Sometimes, especially in longstanding Parkinson’s, the change between on and off can happen very quickly. As Parkinson’s progresses each dose of medication does not always last as long as it used to, and the change from on to off can be quite unpredictable. Please also see our section on “Freezing

Involuntary movements (dyskinesia)

Involuntary jerking, twisting, twitching and writhing movements of different parts of the body are known as dyskinesia. Some people with Parkinson’s experience dyskinesia when their medication is wearing off or just before it is due. Others experience it when the levodopa levels in the body are at their highest. It is unusual to have dyskinesia in early Parkinson’s, but a lot of people develop it after several years of treatment with levodopa. Nobody is exactly sure why this happens.

What to do about these symptoms

Sometimes changing the timing of medication or giving smaller doses more often helps to smooth out symptoms. Talk to your Parkinson’s specialist team before changing anything. It can be helpful to keep a diary of your symptoms where you record what time you took your medication and what symptoms you have throughout the day to help your specialist understand how best to help you. Some people find that if they take their medication with a meal containing a lot of protein that the medication does not absorb predictably. If that is the case your specialist may change the timing of your medication.  Try not to eat meals which contain very large amounts of protein at the same time as medications.  The section on freezing includes some “rescue tips” to help manage these episodes.

Adapted from Parkinson’s UK: Dyskinesia and wearing off | Parkinson’s UK

flail, fling, writhe, motor fluctuations