Life On The Road with ALS

ALS Advocacy One Mile at a Time

June 2023

  • The Kindness of Strangers

    In public forums, i.e., news outlets, social media, and even print, there is a pervasive divisiveness perpetuated in the world. Publicly, civil discourse has been replaced by self entitled unyielding forced beliefs. In the public sphere, where the masses consume information from a buffet without any nutritional value. They gorge on hollow calories the pundits Read more

  • Sparkle

    Recently, during a Zoom meeting of life-minded individuals, writers; each of us personally touched by ALS. A poem was shared about allowing oneself to be comfortable shining your inner light. This turned into a discussion about sparkle, a person’s sparkle. But what is sparkle? It is, in essence, the energy one emmits that lights a Read more

  • See Me!

    We are, I am, You are… much much more than our appearance. I am not deaf because I’m in a wheelchair! I’m not mentally challenged because I am in a powerchair! Although my condition is challenging, mentally. I’m not blind because I am in need of assistance, but I do see your ignorance! I am Read more

  • Miles and Miles of Smiles

    The miles are adding up for this trip. Since we left on May 19th, we’ve added over 200 miles… to my wheelchair. Oh, were you thinking the RV? I’ll have to ask Meg what the mileage is on Big Blue now. Stand by… 26383 miles. May of last year, when we bought it, it had Read more

  • How we Roll

    Departure routine for Meg, as we travel: At first, it took a good hour or so to accomplish the tasks above. Meg has it down to about 30 minutes. She can actually disconnect or set up in about 10-15 minutes if that’s all she’s doing. Yes, you should be impressed. Why? Because Meg has always Read more

  • Lazy Day

    Run, run, run. Do, do, do. Got to get it done. Why? Why do we run ourselves ragged? I’m not talking about work, school, or essential things that need to get done. I’m talking about the other stuff we pile on ourselves, that DIY project, the millions of other things we have on “The List.” Read more

  • Enough

    Before I lose the ability to say this, I want to say it now to my family. Especially my wife Meg. But I also wish to say this on behalf of others who may not be able to. As a Caregiver, to me, you did everything humanly possible. At times, your strength astounded me. Matched Read more

  • ALS: The Cloak of Invisibility

    You have ALS… Disappear.Go home and die.Get your affairs in order. No, I will not! The statements above are harsh, but they are true. Or at least they were. Slowly, this is changing, as the ALS afflicted gain their voices in the prognostic conversations. “Yes, it’s terminal, but I will find a way to live Read more