People trust stillness. Stillness looks controlled. Add an unexpected sway, twist or jerk, and suddenly the person standing nearby has been promoted to amateur detective.
A person with Parkinson’s shifts constantly in a chair, rocks while standing or moves in a way that looks loose and unpredictable. What people see may become a quick diagnosis: intoxicated, anxious, reckless, trying to be funny or taking too much medication. Apparently, a body moving differently is public evidence and everybody else has been appointed to the jury.
What may actually be happening is dyskinesia—involuntary movement associated with some Parkinson’s medications, most often levodopa. It can affect the face, arms, legs or trunk. The movements may be fluid, writhing, jerking or nearly invisible to the person having them. They can be mild, exhausting or disruptive enough to interfere with balance and ordinary tasks.
Dyskinesia is not the same as tremor, and it is not simply Parkinson’s getting louder. It often appears when medication is working and dopamine levels are changing. Some people experience it near a peak dose; others as a dose begins working or wears off. The timing matters because the treatment decision is rarely as simple as ‘make the movement stop.’
For years, I knew the bargain. Medication could release movement and also produce movement I did not request. Reducing it might quiet the dyskinesia while allowing stiffness, slowness or OFF time back into the room. More movement can look like too much treatment from the outside while feeling like the price of being able to function from the inside.
The movement may be involuntary. The public verdict is usually deliberate.
That verdict has a cost. A stranger watches longer. A clerk becomes suspicious. Someone speaks slowly and loudly, as if involuntary movement erased comprehension. Friends tell the person to relax. The body is already spending energy on motion it did not choose; now the person has to manage everybody else’s interpretation too.
There is another mistake worth dropping: visible dyskinesia does not tell you how distressed the person is. Some people would rather tolerate mild extra movement than lose mobility to an OFF period. Others find dyskinesia painful, unsafe or socially exhausting. The observer does not get to rank that tradeoff by how uncomfortable it makes the observer feel.
What needs to change begins with restraint—the social kind. Do not stare, grab, imitate or ask whether the person is high. Do not treat unusual movement as permission to question competence. If help might be useful, ask one normal question and accept the answer.
Treatment belongs in a real conversation with a Parkinson’s clinician. Depending on the pattern, options may include changing medication dose or timing, reviewing other dopaminergic drugs, using medication aimed at dyskinesia or considering advanced therapies. Nobody should change Parkinson’s medication abruptly or chase a perfectly still body without understanding what that stillness may cost.
The goal is not to make disability visually comfortable for the room. The goal is usable movement, safety and a life the person can actually live.
TODAY’S DEFIANT TRUTH:
The body can move too much and still be fighting to move.
See the movement. Stop inventing the person.
Live Defiantly. — Richie Pikunis