Menu Close

Petra Pleunis

Auto-immune encephalitis

Image

One Saturday in November 2023, I woke up from the alarm clock set by my partner, Simone. Since I was surprised that the alarm went off, I asked her why. “It’s Saturday, after all; I just have to work at my wine shop.” Pleasantly surprised, I said, “Wow, a wine shop—how nice.”

Simone thought my reaction was pretty strange because she’d actually owned that wine shop for 13 years by then. So, she checked again: “Do you know that you proposed to me?” Once again, I was pleasantly surprised: “No, but that’s so nice!”

With screeching tires, we drove to the SFG hospital, where my condition only got worse in the weeks that followed, and I had to fight for my life. In addition to my memory problems (I could only remember things for 20 seconds), I had no notion of time or place, I had massive headaches, was nauseous, and was having seizures.

Naturally, the doctors went into overdrive trying to figure out what was going on and why I couldn’t remember anything and felt so terrible. So, they took samples from my spinal cord. I heard later that it didn’t go well—they kept missing the spot, and I screamed and screamed, which echoed throughout the entire hospital (there are a lot of nerve paths there, which is why it hurt so much). It was hard for my partner to watch, but I’d already forgotten about it 20 seconds later. So, losing your memory isn’t always a bad thing.

By then, we already knew from the scans that I had encephalitis in both parts of my brain (it’s usually just one side). The samples that were tested at all the academic medical centers in the Netherlands came back negative. The conclusion was that it wasn’t viral or bacterial, but an autoimmune disease.

At Erasmus MC (where I was staying at the time) I started to improve, especially after the prednisone, and was allowed to go home after 4 weeks.

I was brought home by dear friends, and something happened that neither my partner nor they could have imagined: I didn’t recognize my own house. Strange!

Your memory contains so much. Besides facts, it also includes recognition. Not just of a house, but also of friends’ children; they suddenly turned out to be about 10 years older than I thought. But also taste: apparently, you build up a taste memory, and I went back to the past and could only/mainly appreciate sweet things.

We now know that I have a gap of about 10–12 years. So, I’m living with someone I don’t remember at all—but fortunately, I have very loving feelings for her. I also proposed to her again; it would be nice to be able to remember that too. Fortunately, she said YES again.

Right now, I can hold onto memories for about two days. So, not a boy without yesterday, but a girl without the day before yesterday.

At first, the main goal of my rehab was to improve my situation. I did that at a few different centers: Rijndam, Klimmendaal, and the JvG Training Center. The last one, in particular, really helped me, because they focus on what you can do in such a positive way, with lots of sports and exercise. Now I’m in rehabilitation at Hersenz to learn to cope with the situation as it is. After all, the assumption is that two years after your brain injury, you’ve reached the “final stage.” I don’t know if that’s true, but through rehabilitation, I still feel like I’m making progress, and that’s truly gold!

I know and feel that, despite this strange rollercoaster and the extensive rehabilitation I still have ahead of me, I am very happy with my life and the incredibly kind people who surround me. I feel like a lucky bastard with these lovely people! And just as important: I’m incredibly happy with what the ItsME Foundation does for people with meningitis and encephalitis and everyone who supports the foundation. That’s so valuable for us and future patients! Thank you!