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Words for the ups and downs

Movement you did not intend

Dyskinesia

Movement that happens on its own — swaying or moving that you did not set out to make.

In the graph

An example curve sitting high around its peak before coming down The horizontal axis runs from 06:00 to 15:00. The vertical axis is how well the body is moving, relative to that person's own range — higher is better movement. Doses are marked at 07:00. The highest point is around 07:45. higher lower 07:00 06 08 10 12 14 An example curve sitting high around its peak before coming down The horizontal axis runs from 06:00 to 15:00. The vertical axis is how well the body is moving, relative to that person's own range — higher is better movement. Doses are marked at 07:00. The highest point is around 07:45. higher lower 07:00 06 08 10 12 14
  • Response through the day
  • Time a dose was taken
An illustration generated for teaching. The height of a curve does not itself mean dyskinesia, and real curves differ from person to person.

Dyskinesia is a difficulty in the opposite direction from stiffness. The trouble is not that the body will not move, but that movement you did not intend appears.

The curve itself does not tell you about dyskinesia. The high part of the graph above does not mean dyskinesia. What helps is marking the times it occurred as events, so you can see where those marks land on the curve. Once several days accumulate, whether that position is consistent begins to show.

It often passes without the person noticing. If a family member pointed it out, that is worth recording just as it is. The time alone is enough.

People often put it like this

  • I am sitting still and my body moves by itself
  • My shoulders or neck sway so photographs come out blurred
  • I often do not notice, and my family points it out first
  • Some days this bothers me more than stiffness does

Things often discussed alongside it

These are factors that come up in conversation about this pattern. This is not a list of confirmed causes, and more than one of them is often in play at once.

  • It is sometimes described as appearing in the higher stretches of the day.
  • It is also described, conversely, as appearing as the response comes down.
  • When it appears and what form it takes differ from person to person.
  • Tension, fatigue and the situation you are in may make it more noticeable.

Worth writing down alongside this pattern

  • When it started and when it stopped Which stretch of the day it falls in is the most useful piece of information.
  • How well you were moving at the time This separates whether it falls in a high stretch or a low one.
  • What time the dose before it was This lets you see its timing in relation to the dose.
  • Which part of the body it was Note whether it was neck, shoulder, arm, leg or trunk.
  • Whether it got in the way Note whether it troubled you, or passed without your noticing.

What you could show your care team

A record is material for describing your situation. Decisions about which medication you take, at what dose, and at what time belong with the clinicians who look after you.

Start recording