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. 

Screen Shot 2018-04-20 at 5.05.15 PM

 

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!

Screen Shot 2018-04-14 at 11.14.23 AM

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!

224760_5490258572_585_n (1)
08.07. 2007 – Central Park, NYC
Screen Shot 2018-04-14 at 11.29.11 AM
asthecrowfliesofficial Instagram

Screen Shot 2018-04-14 at 1.48.03 PM

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

Screen Shot 2018-04-14 at 11.28.41 AMScreen Shot 2018-04-16 at 12.04.46 PM

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.

IMG_1116
03.28.2018, NYC