When Will The Music Stop?

  Sara and THE LAST MARATHON team The blog this week has a very special guest blogger. My dear friend Sara Eolin, co-owner of Rocket Film and the force behind the making of THE LAST MARATHON documentary. I'll be back next week live from PORTUGAL! ...remember make good days great, no bad days allowed - Anton --------------- Hello everyone. Long time reader, first time writer. I have been asked to hop on to blog this week which is a great honor and I hope I do it justice. While prepping, I realized I have NO pictures with Anton. None. Nada. Had to remedy that, so I was VERY lucky to get THIS!!! WOOO!!!!    Totally adorable We look super happy, not just because we were laughing for 2 hours straight, but that the ACT for ALS bill passed the SENATE and was going to be signed by President Biden the next day! (Should have happened Friday!) This is a total gamechanger for the ALS community, and Anton and Mari had a hand in getting lawmakers to see the brutal reality this disease brings to

Welcome to Season 2, Episode 6 of my blog "When Will The Music Stop". I so enjoy sharing my life and, on occasion my relevant past, with you and out loud. Hope and despair, laughter and tears, happiness and sadness, love and indifference, victories and defeats. We have all experienced these extremes and many others, many many times over. Sadly, I scan through a majority of these emotions daily. Prior to ALS I thought I would live to age 81. Why 81, I don't exactly know but it has to do with baseball. It made sense to me when I was 54, I was heading into the top of the 7th inning. It's downright creepy and wrong to know your expiration date, give or take a few months. Trust me, it is so much more peaceful not knowing. Through it all, I have one thing that keeps me positive and optimistic, and that is...... .....HOPE. A life without Hope is not a life lived in today, and today is all we have. Sometimes I have to settle for the willingness to be hopeful and that has to b

2013 Iberian Peninsula I'm back after taking a week off. Mari and I were incredibly busy and working on minimal sleep and I just didn't have the time nor energy to write a meaningful blog. Sleep continues to be a battle for me, and by association, it carries over to Mari. A few items to update you on from my last blog entry. I'll begin with the light -hearted update first. It's pretty incredible the growing number of friends heading to Portugal with us. Two weeks ago the count was at 13, including us. We now have a full posse of 18 traveling. At any point, there are a minimum of 13 of us in country. That is music to my ears, eyes and heart. I'm hopeful that my dear friend from Paris can pop over for a few glorious days. Who knows, I may have to stay there, wouldn't that be nice. The other great news is the congressional bill we have been advocating for, easily leaped another hurdle. On Wednesday the "ACT for ALS" bill received a full committee "YE

Kitty's view from the cheap seat, but has a window Welcome welcome welcome to the 4th installment of Season 2 of my blog "When Will The Music Stop?". Today's blog makes me very happy to share, regardless of the extreme lower back pain I've experienced this week. It's the first time for me and I have reached a new level of empathy for those with chronic lower back pain. I already have trouble sleeping and the pain doesn't help me and, by association, it certainly doesn't help Mari. But she is a world class warrior and I'm not exactly a cream puff. As previous generations believed, good things, and deaths, come in threes. Hinky. Today I am very excited to bring two prime cut choice tidbits of news, so let's get to it. First, I would like to disclose that I'm listening to The Who, The Rolling Stones and Fleetwood Mac, all in honor to Valerie, my sister, who made sure her little brother had a proper education on great music. It's not a coin

"Fuck Off" - Logan Roy The "fuck off" in the title is my nod to Logan Roy, a great character   i nhabited by Brian Cox. But really, w here in hell did those nasty tiny ankle biting mosquitoes come from this year? I haven't seen a full sized mosquito since 2019BC (Before Covid). Anyhow, it is very annoying and frustrating to not be able to shoo away flies, squish mosquitoes, pulverize ants or scratch an itch. It never fails, when I go in the backyard to get grounded and fresh air before I start my day, it takes about 5 minutes for a fly to start annoying the shit out of me and totally destroy my serenity. It has nothing to do with me being Italian, at least I think not. Just one of the obstacles in not having full use of your arms. Also, I don't have the range of motion to even pick my nose, and you really can't ask anyone to take over that house cleaning task. Thank you for inventing the personal humidifier to speed things along if you know what I mea