Love and happiness… a photo album Vlog

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.

This is an ALS Warrior…

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!

His Documentary: “The Strongest I’ll Ever Be”

Precious moments…

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 pre-prom w/ Dad!

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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  


Ryan’s prom night, two years ago.

A wonderful recognition from The ALS Association, CT Chapter!

Screen Shot 2018-05-12 at 4.06.14 PMOn 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 Bridgeport’s 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 Gehrig’s disease, on his 40th birthday. David then became chairman of The ALS Association Connecticut Chapter. Below are some examples of David’s work, as well as photos of David with close friends and family. David will be sorely missed by many.

My Personal Story… ALS Awareness Month

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

A Vlogumentary… it’s a thing

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.


My wish grant story published…

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!

Well here is the recap just posted on the Do It For The Love Website.

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!

Check it out on their official site by clicking here or on the picture of the article. 

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As the Crow Flies…

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!

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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!

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08.07. 2007 – Central Park, NYC
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asthecrowfliesofficial Instagram

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This band is kick-ass… guitarists Marcus King and Audley Freed, keyboardist Adam MacDougall, bassist Andy Hess, and drummer Tony Leone

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Life, Love and Laughter

Lookin for life, love and laughter.
Everything in between and what happens after.

Donavon Frankenreiter – Life, Love, and Laughter

Don’t look back, it won’t do any good
Don’t look ahead you’ll just be misunderstood
Everything you need could be right in front of you
It doesn’t take much to see what is true
They say we are going to die if we go on like this
Who do you believe? Every story has a twist
Take a look around, tell me what you see
People in the world just trying to be free
What about all those things you could have done but you don’t?
They say things happen for a reason, you don’t do them, they won’t

I’m looking for life, love and laughter

Everything in between and what happens after
I’m looking for life, lookin for love, lookin for laughter

Things are gunna change, they never stay the same
That’s why we’re fighting a war but the people are to blame
You can only stand up for what you believe
Don’t be blinded by the power of greed
What about all those things you could have done but you don’t?
They say things happen for a reason, you don’t do them, they won’t

I’m looking for life, love and laughter
Everything in between and what happens after
I’m looking for life, love and laughter
Everything in between and what happens after
Looking for laughter

We got everything we need
All the money in the world, want to buy what we see
Dreams are worth more than gold
Some people hold on, some people let go
The stars all come out at night
The velvet sky, all so bright
I feel so close to you
Because I see what you see too

I’m looking for life, love and laughter
Everything in between and what happens after
I’m looking for life, love and laughter
Everything in between and what happens after
Looking for laughter

Let them soar

Anger… Be Gone!

Well, well well… I’m back with another installment of this little blog I’ve started up. It’s been a while since I’ve posted so a lot’s been going on. Some good, some great, some not real good. My hair and makeup assistant couldn’t make it in this morning so no video blog today, so typing on my slick Mac it is.

Here’s the non-bs answer on “how my doin”… well, sneaky depression has reared its ugly head and has tried to weave itself around and within me as it likes to do when my guard is down. I have been fighting my best to brush it off. Most times that works. I try to be strong and power through, use all my resources and professional help. Hell, I’m a self-professed warrior, for crying out loud. I strive to share and to shine hope with grace. But here’s a real trick, taking my own advice and counsel.  I can’t always ignore the realities of my life. I have to allow myself the right and the strength to take what comes at me, process and feel it. I give myself permission to wheel myself into my bedroom and let out the raw emotion. It needs to be done at times to cleanse my soul. I write this blog for many reasons but one big one is to help me openly express myself and allow myself to be vulnerable. To accept help from others and to maintain my core strength and ability to help others.

I’ll open up a bit and share what it is I’ve been struggling with. The one thing I do know to be a fact. These feelings I may be having now… “These too shall pass.” I say it over and over and I believe this wholeheartedly, but I also add “hurry the fuck up already!”

Being someone who had never really been sick in my life, no surgeries, no broken bones. I was always a fairly healthy guy, not withstanding my later years “Dad bod.” Anyway, the point is, I had no sense in what it would be like to be disabled in any way. Things I took for granted day-to-day all of a sudden were becoming compromised. Once finding out that what I was dealing with was progressive and untreatable, my biggest fear was my continuing loss of my independence. THAT… that is at the core of what tries creep back into me. I try to will it all away, laugh at it… stare it down. A year ago when I lost the use of my second leg and was confined to a wheelchair, that was hard. No BS, it crushed my independence, my freedom, my ego and so much more. The last time I was able to drive a car, or walk the halls of Apple (the greatest company in the world! IMHO). I regressed, turned within myself and dealt with anger, denial and disbelief. But I kept it in. Friends and family were there offering help, I didn’t want to see anyone. I hoped though that acceptance could be around the corner if I’d just embrace it, change my thinking. That became true, and this is how I will feel again. Maybe just after I publish this post even.

The need to pick myself back up when I fall must be practiced and I must be on guard and on the lookout for the fears of life that will try to take me down. This is what has me off-balance now, had me take my eye off the ball of acceptance and the “never give up” mantra I believe so much in.  For you, It could be something different, something personal, big or small. Doesn’t matter because it affects YOU!

I started to feel weakness in my left arm last year, the progression had been kinda  gradual, Neurologists felt that I was a fairly “slow progresser.” Very good news for an ALS patient. I still had a good deal of independence. I could use my arms and upper body strength to do most things. I was getting around town in my speedy power chair very well. Using both hands to raise a glass, give a hug, a high-five or just grab the TV controls from my daughter sitting next to me. Well, sadly I have just recently lost full control of my left arm. It was going, but now I have to accept this next level of independence is gone for good. My right arm is holding on at about 70%. While my mind is sharp as ever (not saying much) my body won’t comply. So along with other issues, a big one now becomes my Home Health Care. How do I care for myself when it comes to physical tasks and most chores. I can’t. I’m a proud man, a strong man, a father teaching by example. Relying on a caregiver is what I now need to accept. While it’s hard for me, I do always try my best to live each day with a smile on my face. But new reality is the job of being my caregiver is a hard and unforgiving one. While I have endless love for my caregiver, the mother of my kids, who’s given up so much. I see the pain in her eyes when she see’s me suffer just a little more each day. Having to lift and transfer 180LBs of dead weight from my chair to my bed for example. Many, many strenuous tasks. Because I know everything going on within me, my feelings, emotions, sympathy and compassion… all still intact. I feel the burden I’ve become to my family. There’s is an unforgiving job, and it’s done out of love and with no income. We all have our limits and breaking points. This… this is what I’ve been battling with these past two weeks. How to provide them with respite and relief? The burden is physical, financial, emotional. It’s normal. It should be expected. I fear this could create undeniable stress to my family. That’s the evil talking, and dosen’t seem to care I am disadvantaged, from a condition which is akin to a life ‘locked inside a body that won’t move.”

Ok…. deep breath… that’s it for my public rant.

The rest of it is very personal and I’m still processing it with the help of my care team. One of which just informed me of the realization that what I am feeling is anger, even rage. Not a freakin pity party or poor me kinda thing. This is good news. Because once the fire of anger or rage inside of me burns out. It will be gone. I feel it already.

This was more than I intended to share. It’s all extremely personal. But the fingers on my good hand couldn’t stop relaying what was on my mind. I owe it to those reading here to see I am no super human.

“If you prick us, do we not bleed? if you tickle us, do we not laugh? if you poison us, do we not die? and if you wrong us, shall we not revenge?”  That’s Billy Shakespeare by the way, and yes I just impressed myself!  Ha… see I’m on the rebound.

One from which I will rise stronger.

For there is no doubt to that.

03.28.2018, NYC