The Schedule Was Predictable. My Parkinson’s Wasn’t.

For a long time, one of the hardest parts of Parkinson’s was trying to make a predictable medication schedule work with a disease that was anything but predictable.

By around 2016, I had already started noticing that my medication was not working the way it had in the beginning. Over the years that followed, especially from about 2018 through 2023, managing Sinemet became a major part of my day.

The schedule was predictable. My Parkinson’s wasn’t.

Living by ON, Muddy and OFF

I began thinking about my days in terms of ON time and OFF time.

When I was ON, I could function well enough that somebody who did not know me might not even realize I had Parkinson’s.

Then there was what I called muddy. That is my word, not a medical term. Muddy was the in-between state. I might shuffle, lose some balance, ache, feel tired, or have trouble walking normally, but I was not completely OFF.

OFF was different.

At my worst, I could have trouble walking, getting up, moving normally, using my hands, speaking clearly, or even rolling over. My posture could collapse forward. I could hurt. Tremor could appear. Everything could slow down.

And sometimes the transition happened fast.

It felt like falling off a cliff.

I Was Budgeting My ON Time

As the medication windows became shorter and less predictable, I started budgeting my ON time.

If I knew I needed to be somewhere, I was thinking about when to take medication so I would hopefully be ON when I got there. If I was going to see my daughter, go to church, attend a meeting, shop for groceries, or sit in a doctor’s office, medication timing became part of the plan.

I was doing Parkinson’s math.

I was constantly trying to figure out how to get through the next thing upright and functioning.

There were times I would be sitting in a group meeting silently calculating whether I should take a pill now so I would be ON by the time everybody stood up to leave.

When my daughter was younger, there were times I planned medication around the time I had with her because I wanted to protect that visit as much as I could.

The Dose That Did Nothing

I also had what I called a dud.

Again, that is my word. I was not saying the pill itself was defective. I meant that I took a dose and felt no noticeable response, or the response seemed much later than I expected.

That could become incredibly frustrating.

There were times I would take another dose because I thought the first one was not doing anything, and then almost immediately the first dose would seem to kick in. Now I had already swallowed another one, and later I might end up dealing with dyskinesia.

I do not describe that as advice. It is simply what happened to me during a period when I was trying to manage increasingly unpredictable OFF time.

Sometimes the Day Just Ended

I remember being in a grocery store with a cart partly full when I realized I had forgotten my medication reminder and my pills were in the car.

I could feel the cliff coming.

I left the cart and headed for the car because getting to my medication and getting home became more important than finishing the shopping trip.

Another time, I was waiting for a haircut and felt myself beginning to go OFF. I left without getting the haircut.

Those moments may sound small, but when Parkinson’s begins deciding whether you finish an ordinary errand, they do not feel small.

The Catch-22

One of the strangest parts of all of this was that I wanted people to understand how bad my OFF time could be, but whenever I knew I was going to be around them, I did everything I could to make sure they did not see it.

I wanted people to understand how bad my OFF time could be, but whenever I knew I was going to be around them, I did everything I could to make sure they didn’t see it.

That included doctor appointments.

I would do what I could to be ON enough to get there, walk in, sit in the room and communicate. Then the doctor saw the version of me that had successfully made it to the appointment—not necessarily the version of me that had been unable to move normally at home.

I also know I did not always communicate the severity very well. I have never liked feeling as if I was complaining or asking for sympathy.

So there were doctors who may simply not have understood what they were not seeing.

Managing the Person With Parkinson’s

For much of this period, I was living alone.

That meant there often was not another person there to watch what was happening, recognize that I was declining, remind me what I had done, or help make the next decision.

I was the person experiencing Parkinson’s. And at the same time, I was the person trying to manage that person with Parkinson’s.

At my worst, nobody saw the whole thing. The worst episodes happened when I was alone.

And then, sometimes, the medication would finally seem to work.

I might feel a tingling sensation in my legs and suddenly—boom—I could stand up and walk much more normally again.

The contrast could be that dramatic.

A medication schedule exists on a clock.

Parkinson’s exists in a body.

And sometimes those two don’t cooperate.

I’m not the expert on Parkinson’s. I’m the expert on me.