For years, I thought of Parkinson’s medication as something I took on a schedule.
Then I learned that food—especially protein—can affect the way levodopa works for some people, and I began to believe it was affecting the way it worked for me.
I do not remember anyone clearly explaining that to me when I was first diagnosed. Maybe someone did and I did not retain it. By the time I really understood the connection, probably around 2022 or 2023, it felt like a revelation.
And once I understood it, eating stopped being simple.
Once I understood the connection, I didn’t just start scheduling my medication around food. I started scheduling food around Parkinson’s.
I Couldn’t Just Eat Anymore
Food became another calculation.
When did I take the last pill?
When is the next one?
How much protein is in this?
What do I need to do later?
If I eat this now, am I going to be muddy or OFF when I need to leave the house?
I couldn’t just eat anymore. I had to calculate whether I could eat.
Sometimes I ate the hamburger or steak anyway and accepted that I might not feel as good afterward.
Other times I avoided protein. Sometimes I avoided food altogether.
There were days when I would go most of the day without eating, and occasionally longer, because eating felt like one more variable I did not know how to fit into the medication schedule.
Sometimes hunger felt easier than eating.
I got very good at ignoring hunger.
That is not something I recommend. It is simply part of what happened to me while I was trying to control my ON and OFF time.
Everybody Else Was Looking for Protein
Eating with other people made the calculation even stranger.
I remember looking at menus and thinking less about what sounded good and more about what I believed would interfere the least with my medication.
I might choose something like a salad and onion rings because I believed it would be lower in protein than the other options.
Everybody else seemed to be looking for protein. I was looking for the things that didn’t have it.
That is a strange way to think about food.
Knowing the Variables Didn’t Mean I Could Make Them Fit
As Parkinson’s progressed, my medication windows became shorter. At my worst, I remember taking doses roughly every 80 to 90 minutes.
That made meal timing feel almost impossible.
If I needed medication that frequently, where exactly was the meal supposed to fit?
Learning more about the relationship between food and levodopa did not magically solve the problem.
I learned more about the variables, but knowing the variables didn’t mean I could make them fit together.
Sometimes my reaction was basically:
“Great. Here’s one more thing I have to calculate.”
What That Could Look Like in Real Life
While we were developing this experience, I had a morning that reminded me exactly why this subject mattered.
I had eaten an omelet with eggs and sausage around 9:00 in the morning.
Later, I spent hours feeling muddy or OFF while I tried to figure out what my body needed. I was managing medication, thinking about my DBS settings and waiting for things to settle down. It was around 1:30 in the afternoon before I felt ON again.
I cannot prove from that one morning exactly what caused what. Parkinson’s has too many variables for me to make that claim.
But it was a very real example of the kind of calculation I have spent years making.
The Physical Cost
Over time, I became very thin.
I could see bones I had never paid attention to before. My face looked sunken. At one point my therapist told me I looked depleted. I described myself as looking like a toothpick.
I would never claim that avoiding protein alone caused all of that. Weight and nutrition in Parkinson’s can be complicated, and many things were happening in my life and with my health.
But I do know that there were periods when my attempt to manage medication and OFF time affected the way I ate.
The Equation Keeps Changing
Later treatments changed parts of this equation for me. Continuous levodopa delivery, for example, became a different experience from relying entirely on pills, and that deserves its own story.
But for years, oral medication, food and protein were tied together in my mind every time I planned a day.
That is one of the things I wish I had understood earlier—not because knowing it would have made Parkinson’s easy, but because I would have understood one more variable in what was happening to me.
Once I understood the connection, I didn’t just start scheduling my medication around food. I started scheduling food around Parkinson’s.
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