Living with ALS — amyotrophic lateral sclerosis — is a journey unlike any other. It’s a reality that brings many questions, many emotions, and sometimes, a profound sense of uncertainty. What does it mean to live with this disease? Am I just existing? Am I simply waiting to die? Or am I still creating memories, leaving a legacy, and truly living?

The honest answer is: all of the above.

Yes, ALS is a harsh reality. It is undeniable that some days feel like just existing — going through the motions as my body changes and challenges grow. It’s true that there is an awareness of mortality, a quiet waiting that shadows every moment. But this is only part of the story.

Over the last year, Meg and I have spent more than six months traveling, broken into multiple trips across the country in Big Blue, our RV. We’ve faced hardships — medical speed bumps, mechanical mishaps, and stressful situations that tested our patience and faith. None of these were insurmountable, but they required resilience, goodwill, and a steady heart.

What has been most remarkable, though, is the incredible people we have met along the way. Despite the media’s often doomsday narrative, the truth is far brighter. Our nation is full of amazing, giving, and warm-hearted humans — many of whom are walking their own difficult paths.

We’ve met families wrestling with their own struggles: fighting to secure the future of a child, coping with the sudden loss of a parent, and navigating grief that seems too heavy to bear. One family we encountered is coming together to build a family business honoring generations who lived on their land — but also to honor the memory of a child and brother who was abruptly taken from them. The resilience in their hearts, souls, and eyes was undeniable.

These experiences have taught us something profound: grief, suffering, and pain are not possessions we own — they are burdens we share. They connect us in ways that transcend circumstance.

And through it all, Meg and I continue to create memories. Every mile we travel, every connection we make, every story we hear adds to the legacy we hope to leave behind. This blog, Juander With Us, is our way of sharing that journey — the realness of living with ALS, the beauty and the struggle, the people who inspire us, and the hope that keeps us moving forward.

I admit I have been negligent in keeping up with this space, but now I’m ready to revitalize it. To continue sharing our adventures, reflections, and the realness of living with ALS. Because life, even with its challenges, is still full of meaning.

Thank you for being here with me. Let’s keep moving forward together.