Follow Our Journey
Join Meg and me as we hit the road in our RV, Big Blue. We’ll be meeting fellow travelers and exploring the beauty of our great nation, one mile at a time!
• • •
- Living with ALS: What Does It Mean to Me?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.… Read more: Living with ALS: What Does It Mean to Me?
- Skeleton MeAs my ALS progresses, I feel myself slipping away, unraveling thread by thread until all that remains is a fragile skeleton of who I once was. The disease is a… Read more: Skeleton Me
- Caregiver Burnout: Why It Should Be Recognized as a Medical Condition—and How to Copehttps://www.scribes4als.com/post/caregiver-burnout-why-it-should-be-recognized-as-a-medical-condition-and-how-to-cope “… Caregiving is often described as an act of love and dedication. But behind the compassion lies a heavy truth that many caregivers know all too well: burnout. From… Read more: Caregiver Burnout: Why It Should Be Recognized as a Medical Condition—and How to Cope
- A Celebration of the Soul’s Chorus
ALS may be silencing my voice, but in this quietude, a magnificent chorus begins to rise — the chorus of my soul. It is a song of hope and peace,… Read more: A Celebration of the Soul’s Chorus - Living with Death as a BedfellowThe Battle Against ALS I don’t fear death as much as I fear not living the life I have been given. Every day is a relentless struggle to hold death… Read more: Living with Death as a Bedfellow
- The Hidden Pain of Spouse CaregiversThe Silent Struggle Behind “I’m OK” When we think of caregiving, we often picture acts of kindness, patience, and unwavering support. What remains less visible, however, is the emotional toll… Read more: The Hidden Pain of Spouse Caregivers
- The Journey Through ALS: Pain, Acceptance, and LoveThe journey of being diagnosed with ALS is profoundly heartbreaking, an agonizing experience marked by the harrowing anticipation of one’s own demise. This is compounded by the pain our loved… Read more: The Journey Through ALS: Pain, Acceptance, and Love
- Advocating for ALS at the American Academy of Neurology ConferenceOur Journey in Big Blue In our time traveling in Big Blue, we have tirelessly advocated for those impacted by ALS (Amyotrophic Lateral Sclerosis) and endeavored to inform those who… Read more: Advocating for ALS at the American Academy of Neurology Conference
- A Journey of Connection and GratitudeMeeting the ALS Community Across Our Country As Meg and I embark on our journey across this vast and beautiful country, we made a heartfelt decision early on to connect… Read more: A Journey of Connection and Gratitude
- Slow Down and Smell the ExhaustLessons from the Road with Big Blue The novice motor home or RV enthusiasts, like Meg and I, learned the hard way that we had to slow down. We have… Read more: Slow Down and Smell the Exhaust
• • •
- September 2025
- July 2025
- June 2025
- April 2025
- March 2025
- August 2024
- July 2024
- June 2024
- October 2023
- July 2023
- June 2023
- May 2023
Home
Life On The Road with ALS 