Life On The Road with ALS

ALS Advocacy One Mile at a Time

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  • Speed Bumps…

    So…Rv is fixed. Wouldn’t have needed to be fixed if I hadn’t been a little distracted reading GPS then I would have seen the huge speed bump. I took it about 25mph when it should have been like 10mph. Regardless I can’t change it just feel like crap about it. Juan said I lost my Read more

  • Lights, Camera… Advocacy!

    We set off Wednesday 12 June towards Austin TX. Why? Meg and I are co-hosting a very intimate screening of For Love And Life: No Ordinary Campaign. We settled for the night at a Harvest Host, a church parking lot, for an overnight stay [harvesthost.com]. After Meg freshened up we headed to the Violet Crown Read more

  • Traveling with ALS (and other disabilities)

    *Specific products or services are strictly for reference purposes and do not constitute an endorsement. Although not possible for everyone, Meg and I have learned a few lessons from traveling with my ALS. I am writing this to share with you these lessons. First of all, traveling has different meanings for each of us. With Read more

  • ALS Technology

    ALS, terminal, fatal, incurable, hopeless, and devastating. All of these words are synonymous with ALS. There is one more that has a profound effect on living with this horrible disease… Technology. To cure ALS medically is not economical. The realities are that it’s difficult to find funding for research for a medical cure. I believe Read more

  • Terminal Life Lessons: Possessions

    What do you possess that matters most and is of greatest value? Material things?Wealth?Property?Heirlooms?Art? Yes they all hold “value”, in the world at large. Do you possess them, or are they in your possession? I know, existential semantics. Truly the only things that each of us possess are time and thoughts. When we cease to Read more

  • Saying Goodbye

    Depending on your personal beliefs, saying goodbye could mean, see you later, see you again, or never see someone again. None can be discounted because it’s a deeply personal matter. Regardless of this, saying goodbye is extremely difficult and, yes, also very personal. Living with ALS, if you do, in fact, live beyond the typical Read more

  • Dashing Through Life

    You know that saying; “what matters is not the year you were born or died but the dash in between”…well that’s what I saw last night, when Ales for ALS and Alamo Beer Company released a beer named after Juan. It’s called Juan-dering IPA, and the number of people that came to support estimated about Read more

  • From Hops to Hopes

    Last night, 8 July 2023,was epic! Ales for ALS, in collaboration with Alamo Brewing Co., San Antonio, TX, held a beer release. Humbled by the outpouring of love and support, I was overwhelmed, truly. This was topped off by the refreshing and delicious Juan-dering IPA created by the brewery. The following are a few words Read more

  • Juan-dering Through ALS

    I know it’s silly to wordplay with my name as I share my personal journey with ALS. Some, I’m sure, don’t appreciate it, but it is who I am. By doing so, you are made aware that I don’t take myself too seriously, although what I share can, at times, be very serious and painful. Read more

  • 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