Almost everyone living with Parkinson’s knows the request: “Over the next few weeks, keep track of when you are off.” And almost everyone comes back with a notebook saying Monday was so-so, Tuesday reasonable and Wednesday bad.
That is honestly written, and unfortunately unusable. Not because it is too little, but because it uses the wrong axis.
Why “so-so” is not information
A neurologist can do very little with a verdict on a day. The question underneath is not how bad it was, but when. Off time that starts around half past ten every day points somewhere entirely different from off time appearing at random:
- Just before a dose: the previous dose wears off sooner than the interval, often the first sign of wearing off.
- Shortly after a meal: protein can slow levodopa absorption. That is a timing problem, not a dosage one.
- Scattered at random: this looks more like on-off fluctuation, which is a different conversation.
All three feel like “a so-so day”. All three lead to a different adjustment.
What to write down instead
Three things are enough, and they fit in ten seconds:
- The time it started. An approximation is fine: “around quarter past ten” is usable, “in the morning” is not.
- How long it lasted. Approximate again. Twenty minutes and two hours are different stories.
- What was happening around it. Had you just eaten? Were you walking? Was the previous dose later than planned?
That third point is the one most people skip, and the one that explains the pattern once it shows up.
Why filling it in afterwards does not work
Retrospective memory is systematically skewed for this kind of recording. What was brief disappears, what was unpleasant grows, and the time shifts towards the moment you recall it. In a condition where the timing is the information, that means an evening write-up produces data that looks like a log but cannot carry the pattern.
Which is why it pays to log in the moment, and to make that moment as small as possible. One tap is achievable while you are stiff. An eight-field form is not.
The format a neurologist can read
What you want to bring is not a diary but a distribution: how many hours a day on, how many off, and where in the day those hours fall. That is exactly the picture that drives a change to your schedule: moving a dose earlier, shortening an interval, or changing something about intake around meals.
Parki draws that distribution automatically from your individual taps: a 24-hour dial with your medication moments over the top, and the weekly line underneath. You only record the moment; the adding up is not your job.
A note is not there to grade your day. It is there so that in three months you can answer a question you cannot yet ask.