Austin Adventures (and a Few 3am Lessons)

 Hi from Austin, dear loyal friends and supporters! 🤠💛

I meant to write this update on the plane to Austin — one of my favorite places to write, read, and feel deliciously anonymous. Airplanes are like floating no-man’s-land: no chores, no responsibilities, no one asking questions.

Instead… I fell asleep almost immediately after takeoff. And when I wasn’t asleep, I was popping awake in short, disoriented bursts — the classic “Where am I? Who am I? Why am I in a middle seat?” experience.
Conclusion: I might be more tired than I’ve been admitting.

I left James with Coby again, and overall he was in pretty good shape — though I was quickly reminded that Lewy Body Dementia does not reward shortcuts. Ever.

One night, half asleep and feeling lazy, I asked James if he’d taken his bedtime meds. He said yes. I believed him.
At 3am, the bed started to shake like a small earthquake. James was awake, restless, and clearly not okay. I got up and found the nighttime pills… still sitting calmly on the kitchen table. 🙃

So: meds at 3am, a groggy morning, but at least the mystery was solved. Lesson (re)learned.

The very next night — plot twist! — I went mountain biking with a friend, got gloriously stuck in the mud, came home late and in the dark… and found James doing great. He had eaten, taken his meds correctly, listened to music, and was in a good mood. Lewy loves irony.

Then came another reminder that Lewy isn’t just unpredictable — it’s hourly.
After a long workday and what was supposed to be a quick visit with a friend (ha!), I checked in with James by phone. He didn’t sound great, but not terrible either. When he called back sounding alarmingly confused, I rushed home to find him in a dark, cold house, already in bed at 7pm, deeply disoriented. He’d taken his nighttime meds way too early and hadn’t eaten or drunk enough that day.

So yes — some days, some hours, I swear James seems almost okay. And then… not.

Now for the good stuff 🌈:
We had a visit with our wonderful doctor in Point Reyes, who was very pleased with how things have been going — especially considering my 4½ weeks away in Germany.
James is getting more confident on his trike and has even ridden solo around Nicasio Reservoir. He initiates hikes when friends visit and the weather cooperates. These moments feel huge.

Tomorrow, James and Coby will fly out to join me here in Austin for a little family getaway to celebrate Coby’s birthday. I can’t wait to scoop them up at the airport tomorrow night.

I’ll be back with another update once we’re home again — with stories from our Austin adventure and whatever Lewy decides to throw into the mix this time.

Life continues — messy, funny, exhausting, surprising — and we’re still right in the middle of it.

Thank you for reading, caring, sharing, donating, and walking alongside us in all the ways you do.

With love and deepest gratitude,
James and  Margit 💛

https://www.gofundme.com/f/help-james-navigate-life-with-lewy-body-dementia/cl/o?utm_campaign=fp_sharesheet&utm_medium=customer&utm_source=copy_link&lang=en_US&attribution_id=sl%3Adc346514-01b4-4256-967c-1002ecd812ec&ts=1770239442