Out of the Bubble

 Hi everyone again!

First, a huge thank you for your support—whether it’s through kind words, sharing our journey, or helping out financially. We’re incredibly grateful, and honestly, we couldn’t tackle all of this without you. You’ve been like the wind at our backs, and trust me, we need all the help we can get these days!

Now for more updates:

James has been missing something that’s been a huge part of his life—cycling. It’s not just a hobby for him; it’s his identity, his life elixir. But for a while, neck, shoulder, and elbow pain have crept in during longer rides (thanks again, Lewy, for keeping us guessing). The pain gets so bad he can’t hold the handlebars anymore, which means those rides have come to a screeching halt.

To keep the dream alive, we’re looking into recumbent bikes. With balance issues in the mix, a trike might be the way to go, and we’re also exploring e-bikes for some extra pedal power. James has his eye on a brand called Cruzbike—not exactly a budget-friendly option, but when it comes to quality of life, it feels like a worthy investment.

Meanwhile, I’m still cycling a few times a week—commuting to work or blowing off steam on my mountain bike. When James sees me heading out, he looks at me like someone just walked off with his favorite toy. It’s tough to see, but it also keeps us motivated to find a solution.

In other news, we’re dipping our toes into the world of Ketogenic diets! We found an intriguing article (https://pmc.ncbi.nlm.nih.gov/articles/PMC6356942/) that, while not mentioning Lewy specifically, gives us hope. We figure—why not try? It certainly can’t hurt!

Thanks again for being part of this journey with us. Whether it’s helping James rack up CPAP hours before our 12/24 insurance deadline or exploring new ways to keep him cycling, your generosity makes all the difference. And with your help, we’re tackling these challenges one step, pedal, or CPAP hour at a time!

With love, gratitude, and a sprinkle of hope,

James and Margit