… and sometimes if you have ALS and you’re driving along, around town minding your own business in your power wheelchair… it could be the bigger things that can put a smile on your face! It’s really just as easy as looking up to the sky every now and then. 😜
I had such a great day having cocktail hour on a gorgeous Friday Night in Stamford last night with Lauren. We sat outside, had some adult beverages while listening to an acoustic guitar player. It was so great to be out.. I think we might just make this our weekly Friday night ritual going forward. Also, was happy to run into an old boss from Apple as well.
You certainly can’t blame me for wanting to get my mind off ALS. (thanks, Lauren & Marilyn!)
It was on July 4, 1939, Lou Gehrig Appreciation Day, when the longtime Yankee first baseman uttered the famous words at a home plate ceremony at Yankee Stadium: “Fans, for the past two weeks you have been reading about a bad break I got. Yet today I consider myself the luckiest man on the face of the earth.”
And, in his final sentence, he returned to his opening, saying: “So, I close in saying that I might have been given a bad break, but I have an awful lot to live for”‘
I’ll keep trying to ‘Live Like Lou’ everyday. I truly share the sentiment of those words and will try to channel his strength till the end. Very hard thing to do from a man so larger than life.
Happy birthday America!
This video is about Fathers Day and the emotion I felt today.
It’s both beautiful and bitter sweet.
Couldn’t find the streangth today to open myself up here in a personal video. But here’s a tribute to my Dad’s and me. Father & Son.
Been going through lots of old pictures these days. It’s fun putting some old photos in new digital albums. I have so many great pictures and memories
I haven’t put up anything new here on my blog lately… so I a put together a video while I was going through my photos. One of my favorite Beck songs is the video soundtrack.
I read this tweet from somebody I look up to so very much this morning. His story was one of the first I ever watched after receiving my diagnosis. I’ve added his documentary video below this new one, it’s much longer, but so powerful. He continues to amaze and inspire me. Here is a 5 minute speech from my fellow ALS Warrior! There are quite a few of us and we will continue to spread awareness and show the world what we can do.
His name is Anthony Carbajal a friend… a hero!
My presentation @StanfordMedX “street photographer, with a debilitating disease called ALS. Anthony speaks on the importance of vulnerability and how it allows him to be a “more abled” photographer.” https://t.co/l8uts5dre4
— Anthony Carbajal (@carbajalphoto) June 5, 2018
His Documentary: “The Strongest I’ll Ever Be”
It’s been quite the busy past month or so around here. And it’s really good stuff too! I’ve been getting out much more with the nicer weather. Seeing more friends and family. Lindsey just turning 18 and graduating, means some really precious moments back to back for Lauren and I. She’s growing up so fast in front of our eyes! While I know in the back of my mind that I have something going that makes my life very difficult for our family to manage. I’ma keep on pluggin’ along and put a checkmark next every amazing and precious moment as they come. And many more there will be! I mean just look at this nice list from the last few weeks alone.
Lindsey’s 18th birthday ✅
Lindsey’s prom ✅
Lindsey’s high school graduation ✅
Lindsey’s selecting her college ✅
Meeting Lindsey’s first boyfriend ✅
Ryan finishing his second year @ College ✅
Ryan’s awesome summer internship in NYC ✅
Eric Clapton plays a concert in my town ✅
The Signing of the “Right To Try” Bill! ✅
I could actually go on….
Lindsey’s necklace (an 18th BD gift from me) custom made by my dear friend, Georgianna Koulianos / GK Designs Jewelry
Lindsey’s hair done by my amazing friend and the best stylist anywhere, Melanie Hess
A thanks to all for the contributions during ALS Awareness Month in May!
Here is the post I made on May 1st. It’s my story about my journey with ALS, if you missed it you can check it here:
Press play and see one happy old dude, gush on video. no really… do it!
On Thursday, May 10 the ALS Association, CT Chapter held a great event in Westport, CT that was to be a Thank You to many in my community that have been affected by ALS and to those who are fighting in so many ways to help find that elusive cure
I was honored to be presented with the David Grimshaw Beacon of Light Award. As I continue to try to empower others to live life to it’s fullest, there’s more work to be done as an advocate and to spread awareness. We will find a cure!
My remarks at the event…
About David Grimshaw
David Grant Grimshaw
1/24/56 to 4/30/01
On April 30th, our chapter lost a special man, Mr. David Grant Grimshaw. David served as President of the Black Rock Community Council for 4 years; he helped to establish the Burroughs Community Center in Bridgeport; he was co creator of Bridgeports Lobsterfest; and he was instrumental in the restoration of the Fayerweather Lighthouse at Black Rock Harbor. David was also an internationally known artist. David was diagnosed with ALS, or Lou Gehrigs disease, on his 40th birthday. David then became chairman of The ALS Association Connecticut Chapter. Below are some examples of Davids work, as well as photos of David with close friends and family. David will be sorely missed by many.
As I pondered how best to do my part in spreading awareness to ALS this month, I wavered between writing something poignant or making a video and free styling. It occurred to me that telling my own personal story might make a bit more of an impact.
I have not shared what you will see me talk about in this video with many people. I talk from my heart, unfiltered, unrehearsed and parts are raw and may be hard to hear. Please excuse any use of mature language.
What you see here is me. A person living with ALS.
I hope this brings more awareness.
Someday, every month of the year will be ALS Awareness Month!
This song kind of says it all for me…
Sunsets over the beaches from now on
Each day looking for new ways to go on
Slow burn watching the world turn from my arms
New way of measuring each day till it’s gone
Sunrise building a reprise in my heart
Regret tight around my chest plays its part
‘Till it’s gone
But to shower you with pity would do you no good at all
No good at all
Now watching the sunset, sunset, sunset, sunset
Over the beaches, beaches, beaches, beaches
My first attempt to put together a piece that is somewhere between a Vlog and a documentary. Keep in mind, I have zero film or editing experience, but I do have tons of stories to tell. This time a local Art Gallery’s showing of the art works of Jerry Garcia peeked my interest as I set out to find out more of the history behind “My Jerry.”
The following was made for fun and to speak about the stories of my youth. While there is no ALS content in this post, I hope those effected will see and feel my joy and my desire to keep learning something new everyday. There’s still a lot of awesomeness to be had.
If you happened to see my vlog around my birthday a few weeks ago regarding the wonderful wish grant I received from Michael & Sara Franti’s incredible organization, “Do It For The Love.” Then you know I spent my 55th birthday with my family seeing Billy Joel at MSG. Incredible tickets, hotel, parking everything included! AMAZING!
The synopsis of my story including details of my battle with ALS were written by Lauren and I’m really psyched they included my Vlog with it on their official website!
Well it’s time once again to get pumped up and free my mind from this daily grind that is ALS. I’m getting out to see good old fashioned kick ass, funky rock-n-roll Tuesday night. Everyone at the Capitol Theatre in Port Chester, NY will be shaken’ their money makers for the inaugural performance of As The Crow Flies.
The legendary Black Crowes “officially” broke up two years ago “again” after tensions between Chris Robinson and the rest of the band “again.” Now, he’s started this new project As the Crow Flies with an amazing cast of musicians to revisit the ole’ killer Crowes catalog. I say hell yes!
Living in NYC in the late 80’s through the 90’s as a music fan, you were blessed. We always got the opportunity to see amazing live music… any day of the week, Maybe it was in March and you could just jump in a cab after dinner at the very last minute almost nightly to hit the Beacon for the Allman Brothers, The Grateful Dead (the real one) at the Garden was an annual occurrence. Most nights my favorite thing was to hit downtown to catch regulars like Blues Traveler, or The Spin Doctors at Nightingales. Joan Osborne had her weekly gig at Mondo Cane. The LoneStar Cafe could have James Brown or Etta James just feet away from you at the bar. It didn’t end there, I got to see Pearl Jam play the Limelight, Nirvana play Roseland and hit the Ritz for awesome head-baging at a Guns and Roses or Living Colour show. I could go on and on. I didn’t even mention CBGB, Wetlands, The Academy and Concerts at the Pier. We were spoiled back then.
I guess it was around 1990 I got turned on to this band from Atlanta called The Black Crowes. I heard the cover of “Hard to Handle” on WFUV and was like… Woah, who the heck is that? And just like that, I ventured over to Tower Records and immediately bought Shake Your Money Maker. Finally, I thought… a new album from a fresh band with a familiar old southern rock meets a psychedelic Rolling Stones vibe. Loved that Cd which got worn out pretty quick. Through the years the songs held up and this was a band made to play live and loud. I’d say about 1990 – 1995, was their sweet spot years and I saw them anytime I could. Eventually band riff’s between brothers, Chris and Rich Robinson would either force a split or they’d endure gigs where they wouldn’t even talk to one another. It’s really to bad, I dig Rich Robinson and will also see him play with any of his projects. The last time I saw them together as The Black Crowes was at the Cap, and it was great. Chris has his main new band, CRB, and now this new side gig, bringing back the old songs; song by the only person that should ever sing them. I’m excited to hear the familiar old sound, reverberate through these fragile ole’ bones once again!
As always…. I’ll be parked in the ADA section so please swing by to say hey if you’re there!
This band is kick-ass… guitarists Marcus King and Audley Freed, keyboardist Adam MacDougall, bassist Andy Hess, and drummer Tony Leone