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!

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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.

-Rich

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.

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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!

MANDO

…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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DoItForTheLove.org

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: http://bit.ly/GTBATRemix
Tell us why it’s #GoodToBeAliveToday: bit.ly/JoinNowGTBA

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

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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.

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


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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!”