Life On The Road with ALS

ALS Advocacy One Mile at a Time

April 2025

  • 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, transforming the silence into a powerful opus that tells the story of a life richly blessed by love, acceptance, joy, and yes, even pain. This Read more

  • Living with Death as a Bedfellow

    The 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 at bay, through sheer determination and yes, with a good dose of respect for the reaper himself. He has bestowed upon me this burden called Read more

  • The Hidden Pain of Spouse Caregivers

    The 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 borne by those who provide such care, particularly spouses of terminally ill patients. These individuals face an enormous burden that is frequently masked by their Read more

  • The Journey Through ALS: Pain, Acceptance, and Love

    The 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 ones will also experience. The moment the diagnosis is uttered, it is as though the ground beneath shatters, leaving one to grapple with the imminent Read more

  • Advocating for ALS at the American Academy of Neurology Conference

    Our 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 know little about this devastating condition. Our mission has always been clear: to amplify the voices of those living with ALS and ensure their experiences Read more

  • A Journey of Connection and Gratitude

    Meeting 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 with others in the ALS community. Our route takes us through the many states, and with each stop, we seek out fellow travelers who share Read more

  • Slow Down and Smell the Exhaust

    Lessons 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 learned many lessons as we travel our beautiful country. Many of them because of our adventurous spirit, translation—miscalculations and “I can get through there.” Yes, Read more