Part 6. The Moment a Record Becomes Pharmacology
One of the things a person with Parkinson’s disease says most often in the clinic is this:
“The medication isn’t working well.”
I have said it myself more times than I can count.
But that one sentence holds too many possibilities. Is it coming up late? Is it coming up weak? Is it not coming up at all? Does it come up briefly and then fall right back down? Or has dyskinesia appeared, making things worse instead of better?
Once I started keeping records, these expressions slowly began to separate out.
Chapter 39. ON and OFF alone were not enough
At first, I divided the day into just two states: ON and OFF. But the real body was not that simple.
The body did not leap straight from OFF to ON. A very small sign came first. The feet grew a little lighter. Standing up became easier. The resistance to starting to walk eased. Only then did a sufficient ON arrive. And then it slowly came back down again.
So I began to see the record not as two states, but as a curve.
To write down a curve, two boxes were not enough. So I needed an output score from 0 to 100. OFF at 10. A little better at 30. An incomplete ON at 50. A sufficient ON at 80 to 90. The numbers are not precise biological measurements, but they preserve the direction of change.
Chapter 40. I began recording the first sign
A record more important than the time of the dose emerged.
When did the first sign appear?
For example, if I took the dose at 7:20 AM and the first sign came at 8:00, the rise that day started about 40 minutes later. On another day, if it started at 8:20, that’s 60 minutes.
This difference easily disappears if you rely on memory alone. But if you keep it as a record, you can compare it.
From that moment, pharmacology stopped being the textbook’s Tmax and began to appear on the time axis of my own body.
Chapter 41. Telling four patterns apart in the records
In Part 2, I gave four names to the ways the medication could fail to work: Delayed ON, incomplete ON, ON failure, and wearing-off. Keeping records meant attaching those names to an actual day.
Delayed ON showed up as the gap between the time of the dose and the time of the first sign. Once the feeling of “it’s late” turned into numbers like 40 minutes and 80 minutes, I began to notice how the gap changed with stomach condition, meals, and whether I had eaten.
Incomplete ON showed up as an output score. Days when the body was better than before but stopped at 50. Days when walking stayed stiff and automatic movement never came back. If I had only had two boxes, ON and OFF, days like these would have been recorded, ambiguously, as ON.
ON failure remained as the days with almost no meaningful rise. A single failure doesn’t tell you the cause. Was absorption sufficient? Was it too close to a meal? Was that day’s OFF particularly deep? Did it overlap with another medication? But when it repeats several times, it becomes a pattern.
Wearing-off showed up as how long ON lasted. There were more and more days when the slightest dip made walking worse right away, and the slightest rise brought it back to life again. What I described in Part 2, Chapter 11, as a curve that had lost its buffer, appeared in the records as ON growing shorter and the swings growing steeper.
And dyskinesia also had to be recorded. At first, when dyskinesia appeared, I simply thought, “that was too much medication.” But once I started writing down the start and end times, the output at that point, the most recent dose, and meals, the distinctions from Part 3, Chapter 11, actually became visible: dyskinesia that appears at the peak of drug effect, dyskinesia that appears while rising or falling, and dyskinesia that mixes in with dystonia. Differences like these do not show up if you only record the dose.
Chapter 42. Many days mattered more than one
That is why it mattered that the pattern I saw in Part 5, on August 31 and the morning of September 1, appeared similarly.
One good day can be a coincidence. Two similar days give rise to a hypothesis. Three or four repetitions give a little more grounds to call it a pattern.
This is the difference between a record and a memory.
Memory preserves the intense day. A record preserves the repeated day.
Chapter 43. There wasn’t much that needed recording
At first, I tried to write down everything. That doesn’t last long.
In the end, only a few things mattered.
Time of the dose. First sign. Sufficient ON. Start of OFF. Output score. Dyskinesia. Meals. Sleep. Bowel movements.
Keeping just this much, consistently, already makes the day’s curve fairly clear.
A record is not better for being longer — it needs to be simple enough to keep up.
Chapter 44. A record does not replace a prescription
Keeping a lot of records doesn’t mean I can set my own treatment plan.
If anything, the greatest advantage of a record is that it lets me ask more precise questions in the clinic.
“The medication isn’t working.”
compared with
“Lately, the days when it takes 80 to 120 minutes from the first morning dose to the first sign keep repeating.”
gives far more information.
“The dyskinesia is severe.”
compared with
“On days when I take the dose after an afternoon meal, there are records showing the peak comes later and dyskinesia lasts more than two hours.”
is more specific.
A record is not a tool that replaces a prescription. It can become a language for talking with the care team.