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

Vlog II – Do It For the Love !

Ok well, I guess I’m right back at it. That was quick! But I have some cool news to share! …and it revolves around all the awesomeness that there is left to be had in my life! So please watch my latest video Blog and subscribe if you want to be alerted when I post something new.

Thanks for watching!


…and take the time to watch, hear and listen to this message below as well.

Why???   Because…

It’s Good To Be Alive Today

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One more thing …

With all my years working for Apple it looks like my creative juices are finally flowing again. Enough anyway that I’m trying to pick back up what I learned about rudimentary video editing again a little bit. So I tried some old & new tricks to make the vlog a little slicker. But other than a few splices here and there my audio was unscripted and one take, so forgive me forgetting how to use the English language in quite a few places. lol

and about the video above…

“Good To Be Alive Today (Acoustic Remix)”
Now Available on iTunes:
Tell us why it’s #GoodToBeAliveToday:

Directed and Produced by Michael Franti
Cinematography and editing by John Roderick/ Neu Productions


I want the “Right to Try!”

The House is set to vote today (Tuesday) on the Right To Try Bill.

Latest Update: It didn’t pass. 😦    #F#ckAllThatVotedAgainst!

This whole process is so freaking frustrating and confusing and I’m just so sick of politicians from all sides of the aisle telling patients with little hope of survival what promising treatments they can pursue. In my case, I would like to try a Stem Cell treatment currently under Phase 3 Clinical trials here in the US. The current trial, if you’re accepted into it, gives patients a 50% chance of getting the treatment or 50% chance of getting Placebo. Well… I don’t have time to wait on the FDA, and I don’t have time to waste on the chance of getting a sugar pill. Sorry, I’ve already gone through one ALS drug clinical trial which the FDA finally did not approve after being on it for an entire year. All that time not knowing if I was on it or getting a placebo. I want the choice to get this procedure done now, safely… in this country. Not South America, not Asia, not the Middle East. We need Mass General, Mayo Clinic…. the best medical institutions in the world. Sadly, I think even if this bill passes today, we are still a long ways away.

I want my “RIGHT TO TRY”
End Rant…

Right To Try allows terminally ill Americans to try medicines that have passed Phase 1 of the FDA approval process and remain in clinical trials but are not yet on pharmacy shelves. Right To Try expands access to potentially life-saving treatments years before patients would normally be able to access them.

Advocates for Americans facing terminal and life-threatening illnesses, wrote to urge our support for the Trickett Wendler, Frank Mongiello, Jordan McLinn & Matthew Bellina Right to Try Act of 2018. This bill will help protect the right of sick Americans to try to save their own lives. Fewer than 3 percent of cancer patients can participate in clinical trials, and for less common diseases like ALS and deadly Duchenne muscular dystrophy, the numbers are even lower. Right to Try gives people who cannot participate in trials a new path to access promising treatments.

This video clearly tells it like it is! I am with you, Matt Bellina!

Thanks for advocating for all of us, Matt! #TrueWarrior

House to Give Patients a ‘Right to Try’

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JJ Grey @ the Cap


Another great night out to see some live music with good friends., and a great surprise appearance by my step-sister Julie! So awesome that she came out to hang with us. JJ Grey & Mofro were looking sharp, as the whole band was dressed in fine suits. That a bit kinda weird as I didn’t think that was JJ’s style, but they looked and sounded fantastic. One of the many musical highlights for me was their take on a cover of “Hey Jude.”

Each time I go out now I feel like it’s just a little bit harder than the last time as the ALS progresses. My arms are losing strength and it’s hard not to give people a nice full hug, but I’m not going to let it stop me from enjoying every minute. It’s certainly not affecting my smile! Can’t wait for the next show.

L-to-R – Rich, Julie Gold, Lauren McCabe
L-to-R – Tanya MacNamee, Rich, Lauren McCabe & John MacNamee
Rich & Johnny Mac
View from the ADA section 


Why Blog now?

Once I finally set out to publish this blog, I thought long and hard about what I wanted to accomplish by opening myself up in this format. These were basically my goals…

  • Communicate to friends and family, stay connected
  • Help others embrace the brighter side of their troubles. Show that it’s ok to be vulnerable 
  • Document my journey, and having my writings about my experiences on record
  • Revisit special memories…. share some cool stories
  • Celebrate life. There’s a whole lot of awesomeness to be had
  • Share, discuss and celebrate live music! (because that’s my jam)

So I will continue to use this space to share my unfiltered experiences and thoughts. And not just the sad stuff, but all the great stuff. I’m grateful that you have taken any time to read my ramblings or look at my photos or check out whatever music I share..


This coming Saturday night I’ll be heading over the the Capitol Theatre to see one of the most soulful artists I know. One of the coolest dudes I’ve ever met. If you’re going the Cap on Saturday to see JJ Grey, stop over to say hey! I’ll be parked in my normal spot in the ADA section. Soaking up some music for my soul!

Some old photos w/ JJ Grey…

JJGrey & Mofro – Langerado Music Festival, Sunrise FL – 03.13.2005
Mountain Jam Festival, Hunter Mountain – 08.31.2008
Highline Ballroom, NYC-  09.28.2007

The Mind, Body Connection

I haven’t written anything here in the last week or so, but I have been doing a lot of thinking and reflecting. A dangerous yet interesting and adventurous place for me to be… in my own head. As each day passes, I’ll notice a little something about myself physically here and there that was a bit different from the previous day. It really is quite mysterious and frightening all at once. Lately it’s the use of my left arm strength and dexterity of my fingers. My brain is sending the signals loud and clear to my hand… “Yo arm… reach across the table and grab that water bottle over there!” well it’s really quite frustrating because my arm’s just like, “What was that brain my friend? I’m not picking up the signal you’re trying to relay over here.” Communication breakdown! (queue Jimmy Page guitar riff). I digress… but this what I’ve had on my mind to opine about today. This mind, body connection.

I’m kinda blown away with this concept. This connection between the brain and the body happens on both physical and chemical levels. One never thinks about it…. it’s automatic, it’s instantaneous. I’m certainly not going to bore you with my findings from articles, medical journals and the consultations of amazing spiritual healers. But here it is in a nut shell, there are these little guys called “motor neurons,” or nerve cells that send electrical output signals from the brain to your muscles. And these little guys are needed for your muscles to actually work and function. So yeah, they’re important little guys. We all have em, honestly I never gave them enough credit for the hard work they do. They wield a heck of a lot of power. Those of us with ALS know all to well the frustration of having a brain that remembers how to move correctly, but a body that simply doesn’t. For us, when these motor neurons lose their strength and die, they don’t replenish. Once they’re gone… they’re gone, gone… and nothin’s gonna bring them back. They’re gone.

Yeah so for me this process started almost 5 years ago with my left leg, eventually making it’s way around to the right one. Nobody knows why. Nobody knows how. Heck a bunch of pretty good neurologists couldn’t diagnose it for almost 2 years. Crazy…. I know. Doesn’t seem to make much sense. Completely healthy one day, minding my own business and my left foot starts getting weak. And so this new journey begins. While my mind and my sight will be spared. I notice it slowly, take over parts of my body. But I’m still here, and I fight on with what motor neurons I have left! Sometimes it feels like the fight scene with the Knights in that old Monte Python movie. “It’s just a flesh wound!” haha… I freakin’ love that scene.

So why am I depressing everyone today? I swear I’m not bitching or feeling sorry for myself. I’m actually in a pretty great mood right now. Sunday night shows rock! hmmmm…. Oscars, Walking Dead or Homeland. All three? why not!  I promise not to do this here often. But I need to do what I can to help my brothers and sisters who join me in this fight. There is a cure out there some where, I’m so sure of it. But the urgency and the attention to this cause is not where it needs to be. If the cure doesn’t come in my time, well I must do what I can to spread awareness for the families who will continue to suffer long after me.

I knew exactly nothing about Motor Neuron Disease, as it’s called throughout the rest of the world. I’m far from the only one that had no idea what it is, so I must do what I can to explain what the heck this is like and what it does to people. With so little attention paid to it in the general public, finding a cure is just gonna be that much harder to attain.

So while we watch these perfect movie stars walk the red carpet tonight, think about those you love around you. We all have our battles and we can choose to spread awareness to things that really matter in this world. And so I battle on… “it’s just a flesh wound!”

A Warrior.

I’ve been throwing the term “warrior” out there a lot recently in describing myself and others battling in my world. For a while now I had been searching for an appropriate word that depicts a fighter. This is because that’s the mentality I must have to push myself forward each and every day. Almost like a mantra I repeat to myself each day. It seems so silly to me sometimes. But even when you know in your heart there’s no giving up, for me I have to acknowledge it out loud and hear myself say it.  I’ve been advised by friends to come up with a #hashtag that would stand out and could describe me. The only thing that came to my mind (that wasn’t already taken out there in the interwebs) was #ALSWarriorRich. Yeah I know… slick and sexy, it is not!

So in this post today I would like to write about what a warrior means to me, because it became very clear and very real to me this week. You see this week I lost someone in my world. A fighter, a brave man that looked down the belly of a beast and battled heroically till the very end. A Warrior.

I’d like to introduce you to my friend Jack. Jack was a good friend. We met under difficult circumstances about 10 years ago. We were joined in a different type of battle back then. We built a friendship. We laughed, played guitar together, learned a lot and we were there for each other for a short period of time which felt like ages. After that we would share a front row seat next to each other from time to time and have a chance to check in. Jack was strong and brutally honest and emotional, just like me. He got even stronger in the end. We weren’t best friends by any means, or long time school friends. After 5 or so years we would rarely connect very much. We could see that both of our families were doing well. He posted pictures of his cute son and photos of the food he’d prepare like a professional chef. That’s what happens with friends sometimes… and it’s ok. Life happens and the world spins on. But I didn’t forget that bond we had built and neither did he.

You see over this past year I was struggling privately with my ALS diagnosis. I told no one for many many months. One day I saw a post from Jack and he was in a hospital bed getting tests done. I didn’t know what to think or how to react. At that point I didn’t know that Jack was undergoing cancer treatments. He was brave and so open as he shared his journey, his fight, with his followers out in the open… he battled. As it turned out Jack was dealt a very rare, aggressive cancer.

I finally got the strength to reach out to him by text and see how he was holding up and we once again laughed and we cried. I shared with him that I was also battling a rare and terminal disease. I told him that I don’t know how he did it, sharing so vulnerably to the world? I was terrified of that. He counseled me on the therapeutic and medicinal effects of opening yourself up. And not just the bad stuff. I’d see photos of his smiling face with his beautiful wife and handsome son. He was putting together a cookbook to leave behind with all of his amazing recipes. I marveled at his strength.

Well a few weeks later I decided to share my story with others in the rest of my world. The good, the bad and the ugly. After I wrote out a long post on social media telling the story of my battling an ALS diagnosis, Jack called to check in with me this time. He asked how it felt to let others in and open up about my struggle. He was right, the outpouring of love, compassion and support was overflowing. It was such a nice moment, we joked as only two friends can do. Two good people who have worked so hard to be better people, great dads with bright futures ahead, only now we were dealt really shitty hands in life that were completely out of our control. After sharing some tips and advice to stay strong, we wished each other Godspeed and promised to continue to check in every now and then.

That would be the last time I’d hear from Warrior Jack. Three or four weeks passed, and I didn’t see any social media posts. The other night I saw the the most beautiful sunset from my apartment window. I could feel something greater than myself, something so peaceful wash over me and bring a tear to my eye. I went over to visit Jack’s’ FB page and saw the announcement of his passing. His heroic fight was over. His beautiful family by his side. Jack’s pain and suffering was over. He rests peacefully now, a Warrior. A brother in arms.

The term Warrior now has the meaning I was looking for. This is how I must lead my life. Everyday. Every minute.

Rest in peace, my Warrior friend.


Great friends, snowy night and hot music!


We had such an awesome time at The Capitol Theatre on Saturday night! I was so happy to see so many peeps still came out dispute the cold, rain and snow! It was coming down hard, so I don’t blame those who didn’t venture out. I’ll catch ya next time. Next time for me will be next Sunday night at the Cap for Blues Traveler.
I’d like to give a huge shout out to my dear friends, Matt & Jill who set this all up and flew in from Miami. It was really cool to be there with our daughters. It was their first time at the Cap. Lindsey loved checking out all the Jerry photos and memorabilia in Garcia’s.
The room, half full because of the weather was nice and cozy. The Cap staff is always so great and super accommodating to me in the ADA section. It really makes it a great place for me to get out and see live music with my big ole power-chair. Railroad Earth & Jeff Austin played a fantastic show!

Nights like this I really cherish as my struggles seem to slip away.

Even for just a little while…


The old crew back together @ Garcia’s at the Cap!
 L-R: Lauren McCabe, Matt Bohm, Rich Lieberman & Jill Muller-Bohm

Next generation of Live Music lovers!
Lindsey Lieberman & Halley Bohm

Jeremy Jones



Time flies…

After about a month of non-stop craziness it feels like this week we can finally relax a little bit. Without doubt this has been the busiest time since my diagnosis and it seemed to come with such a flurry. Finally gaining approval from big-insurance, I quickly made my first infusion appointment a week later. The initial treatment being 14 consecutive days of IV infusion of this newly approved drug. While at Stamford Hospital, I decided to get a permanent Port inserted in my upper chest to make these infusions easier in the long run. It was a good move, but it’s still a minor surgical procedure that wasn’t fun. Add in scheduled visits to various doctors, therapists (OT &  PT) and a trip to the ALS Clinic in New Britain, CT and I’ve been running on fumes.

I’m also looking ahead and being proactive in receiving some of the medical equipment that I’ll eventually need for my home sooner or later. Three of these devices were delivered last week and well, I’ll just say it… it’s freakin depressing that I will eventually need the use of these aids and devices. Already having lost the use of my legs has helped get me tougher emotionally. Its also helped that I do have the cool Cadillac of all power-wheelchairs (of course w/ my Dead Head sticker on the back.)

But in the end… there is no real stopping this train as this disease takes away so much in its path, the biggest being one’s independence. As I do everything I can to slow down the train and fight with all my might, this is all a part of the journey. And I’m really trying everything… gov. trials, multiple modalities of therapies, trips to my Connecticut Medical Marijuana Dispensary. I even just made an appointment today to visit Mass General in Boston to see one of very top neuromuscular doctors in the world. #NeverGivingUp

Man… just typing all this out made me exhausted!

So now that I’ve got that off my chest, this week marks another full year with lots accomplished. Thanks to Facebook “memories” I was alerted that two years ago I brought the kids down to Florida to visit family and friends. In these photos I was able to stand on my own two feet, but just outside the frame of those images were my arm-crutches. We had a blast. My daughter Lindsey is in Miami now with her girlfriends, again staying with our life long friends Matt and Jill. I’m so grateful.

Ryan & Lindsey With Dad – Miami 2016
02.10.2016 – Jill, Matt & Rich – Miami Beach

Last year at this very time I was just moving into my awesome new apartment. I cant believe I’ve been here a year! I have full access to everything in a big space, right in downtown Stamford. I can go out and ride around town, hit all the restaurants, stores and parks. I couldn’t do that a year ago. So this has been a huge blessing.

02.08.2017 – Stamford, CT

Most importantly, just about a year or so ago Lauren came back into my life. She’s given up so much to become my full time caregiver. I would be lost without her tireless strength, support and compassion. Sometime soon I’ll probably write more about how this remarkable situation came about. But it’s meant our little family unit is close together once again, and I don’t have to fight this battle everyday all alone. It’s not easy taking care of a pain in the ass like me… she’s an angel!


Super Sunday!

It’s that time of the year… Super Bowl Sunday is here!

Are you a fan of one of these teams, the commercials or the half-time show? It’s always felt like a holiday to me every year. Give me an ice cold beverage of choice… “and pile on the mash potatoes and an extra chicken wing… I’m having a little bit of everything!”

Personally I’m not a fan of either of these teams but I’m going pull for the Eagles on Sunday. My son is now living in North Philly for college and wants take part in the parades and festivities. Ryan, be chill… you’ll be paying me back for any bail money should it be needed.  

Ryan’s first game joining his dad, the first of many over the years!

My son and I are huge Football fans, spending every single football Sunday since he was a baby either watching or attending NFL games. You see he’s had the misfortunate of being raised a New York Jet fan since birth. It was a curse handed down from my grandfather. I owned season tickets for many many years and I couldn’t wait to take my kid to games, just like my Grandfather used to take me. My grandpas’ seats were in the ice cold upper deck of Shea Stadium where I would see one of my idols, Joe Namath play. I can still remember that amazing hot chocolate from that old thermos.

So today’s blog post is dedicated to all the special times we share with our kids. Memories that will last forever. In honor of the Super Bowl, today’s post goes to my son. These football Sundays have and will always mean so much to me because of our father, son time. My daughter Lindsey and I shared our pastsion for music together, can’t wait to share those memories as well!

oh and don’t feel so bad for Ryan, I also brought him up a Yankee fan… so he knows about winning  championships! 😉

@alssucks  #alssucks

Progress and pain, a lesson learned

I guess I’ve arrived at the point where I don’t really care about what others might be thinking and I’ll be vulnerable to the world by revealing what the new me, the current version of Rich looks like.

Well here ya go… This was me this past Monday, post minor surgery to place a permanent port line from my upper chest which connects to my jugular vein. Not to worry… other than being super sore I’m healing fine. This was an elective surgery which will help me to live more comfortably. My new ALS treatment requires IV infusions for about 20 days out of each month for the rest of my life. So this is what people do if they don’t want to get pricked for access to a vein every time. It will stay under my skin and then all I will have when it heals is a super sexy new scar and I can make up some macho story about it 😉

Stamford Hospital    01/29/2018

But really… if you know me well,  you know I would never have been caught dead posting a pic that I didn’t think made me look presentable on social media. Funny how my perspective has changed over time.

I’ve mentioned that I didn’t share with anyone about my diagnosis (other than my mom, who was with me at The Mayo Clinic) when I was diagnosed. Didn’t share with many for almost a year. I didn’t want anyone to see me and think of me differently. I dreaded having to go into work each day as I was progressing (at the best place to work ever!) using a cane at first. I was mortified and felt so silly. When the cane wasn’t enough, I had to use fore-arm crutches. I had a huge brace on my leg. I was falling down, having to get assistance to get up. What other people thought about me affected me way too much at the time. I couldn’t accept my own predicament. I was angry and scared and thinking “why me!”  What were people thinking? More importantly what were my kids thinking, my family and closest friends. This was a very real struggle for me. When should I tell people I have this incurable disease? How do I tell them? So much to consider! When it came to telling my family I knew it would rock their lives. This was not something to take lightly. I agonized over it, did research, sought wise counsel. In the end when I opened up and through all of the tears, Love poured in!

Before I started to feel the effects of ALS, I took living a “normal” life for granted. The days go by and you just expect the sun to rise each morning and this process to just repeat itself… forever. Until life lands an unexpected blow to the gut that changes everything. Once I came to grips with this, I finally got to acceptance. That’s when I was able to let the love of my people in. Sharing now with my large circle of friends, old and new has taught me a lesson I should have heeded long ago. I’ve had this old Dr Seuss quote on my Facebook profile page since the early days of facebook and on my myspace page (gasp!) before that. Even so, I didn’t quite grasp the power and truth of these wise words. I get it now, so here I am… power wheelchair and all. This is the new me.

Amazing…. I still feel that love pouring over me, from you all!

Week One of Radicava: Strongest I’ll Ever Be

“Everyday is the strongest I’ll ever be, and also the weakest I’ll ever be again ” – Anthony Carbajal

Thanks to all who have checked out my blog. I’m grateful for the encouragement and feel your support! It was kinda scary putting my words to the keyboard and being vulnerable. It’s been a long strange process, and I tend to watch each card I play, and play it slow.

My first week of this new Radicava treatment is going really well so far. Stamford Hospital and the nurses in the infusion center have been wonderful in making the process easy for me. Lauren has been with me everyday and It feels great to be doing something that can potentially slow down the progression and help me live with ALS. I’m optimistic and excited to try something new! Of course it would be awesome if this new treatment for ALS worked to reverse or cure this disease. But if this can some how slow down the progression for me and for my fellow ALS Warriors… that’s a huge start.

We need to be around when that major breakthrough happens…  And it will happen!

As I was sitting there yesterday receiving my infusion, I remembered the powerful story of Anthony Carbajal, an incredibly inspiring person who has shared his story with the world so brilliantly, so bravely so full of optimism. Anthony’s quote which I shared above, has stayed with me. I think about it most everyday. He’s a brilliant photographer, diagnosed with ALS. Unlike myself, he has the genetic kind of ALS (Familial ALS) so it runs in his family. I started following his instagram two years ago. His photos are such wonderful images of Life. I urge you to check him and his work out on his website. He, along with many others passionately impart their wisdom to many people on the daily. Many of these warriors I will spotlight from time to time in this space.

Please do take the short few minutes to watch this incredible short documentary. It’s so powerful, educational and emotionally moving. You won’t regret it.

Anthony Carbajal Documentary: Strongest I’ll Ever Be

After being handed a heartbreaking diagnosis of ALS, award-winning photographer Anthony Carbajal confronts the disease that robs him of his abilities and his future, in order to create a meaningful life during what time he has left.

Anthony’s Instagram:’s Website:’s Website:

Ellen Meets Anthony Carbajal – The Ellen showl
A Big Surprise from Ellen for Anthony Carbajal- The Ellen Show

I’m finally approved… the first new treatment in 22 years for ALS

So as you may or may not know, there is no cure out there for anyone with ALS.

Bummer I agree wholeheartedly of course. But progress is being made everyday. I’m more than confident a cure is just years away. I’m certainly gonna do my bit to be here when that happens or help those long after me to have a chance. I’ve spent hours upon hours doing research on everything and anything out there worth trying. There are great strides being made. I’m most interested in what Stem Cell discoveries will bring. I’m fighting for the right to try a specific Stem Cell treatment developed in Israel and I’m fascinated with that. This treatment just last month received approval to move into a Phase 3 study here in the US. That’s really awesome: It means they’re one step (a really big one at that) closer to approval from the FDA.

Now I should tell you that the FDA has approved only one single drug for ALS patients, and that was 22 years ago (since then, nada.) That drug, it’s said, could possibly add a few more months for patients but no one I’ve ever met is excited about it. So that was the state of FDA approving anything significant until this past May 5th, 2017. Then, out of nowhere, medical professionals in the US were  informed that some new amazing drug trialed in Japan, called Radicava extended life expectancy in ALS patients by 33.3% (that’s by a third, for those playing at home).

Wow, I said… sign me up. I’ll start now, let’s do this. I’ve got graduations and weddings and future grandkids to attend to.

Well it wasn’t that easy. Since this news was out of nowhere the US medical community and especially the always-a-pleasure-to-deal-with insurance industry were stumped as to how to get this into the hands of patients that need it and were willing to take it. Wouldn’t everyone with ALS be willing,  you ask? Well maybe not, as this treatment is administered via ongoing intravenous infusions. 

Here’s the process: Patients start with daily infusions for two weeks and then have two weeks’ rest.  Then another 10 days of infusions, and another two weeks’ rest. This process repeats itself… for the rest of your life. 

The next hurdle: who will pay and how to pay for this treatment? The cost of each Radicava infusion is $1,000 and treatment costs $146,000 annually. So…. Insurers are scrambling, trying to figure out how avoid covering. it. Patients that are Medicare and Medicaid are the lucky ones so far. Those people. (including myself) are now getting this approved and paid for. This is the big piece that is holding up the process to get it to folks that need it.

So…. after many many calls and pleas for approval, I was finally notified that I was approved last week. This is more than five months after the first patient started treatment in the US. There are now about 1000 patients nationwide getting the infusions at infusion centers across the country. I feel lucky to finally get approved, even with that frustrating delay. There are many more patients awaiting approval still!

And so… tomorrow, Monday January 22, 2018 I will be at Stamford Hospital at the infusion center and something that may help to keep me around 33.3% longer will be flowing through my veins.

I’ll keep ya posted 😎

With the goods!     01.22.2018