A message of Love & Hope

A video message from me to all of you.

Myself, Lauren and my brother Paul visited the wondrous, beautiful and spectacularly cold (almost zero degrees) beaches of Falmouth, Mass. A long planned trip to Boston and The Cape to meet my new friends and to expand my ALS Warrior family and add some of the worlds best and brightest to my ever-growing medical care team.

In the coming days I will share all of my experiences of compassion, grace & hope. Until then here’s a short Vlog post filmed at the very end of our adventure. You will hear the blistering wind beside my happy voice and the music and video of James Taylor & Carly Simon from the 70’s on Martha’s Vineyard.

A Thanksgiving video message

A Thanksgiving video message from me to everyone. For many of us it’s getting through our hardships and the tough times that make us stronger, leading us to deep gratitude!
Happy Thanksgiving all! -Rich

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Our wonderful Thanksgiving… a short slideshow

 

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❤️  Family  ❤️

Tim Green’s emotional 60 Minutes interview. Watch to help gain and spread awareness 🙏🏻🌻

After a devastating ALS diagnosis, former NFL player Tim Green cries “tears of joy”and calls himself “fortunate,” echoing Lou Gehrig’s farewell speech.

I just finished watching the incredible story of strength and courage being fought by man named Tim Green. I remember Tim Green from his football playing days in the NFL. He was a force to be reckoned with. Since then he became an accomplished author, lawyer, youth coach and most of all a proud Family man above all. The 60 Minutes special that aired tonight; covering his journey and his battle against ALS really hit home for me. Seeing his son side-by-side with him just made me lose it. Family, and the attitude of everyone in the family pulling together as one with the mantra: Never ever give up! – this is what drives me to keep battling on.

ALS does not get very much national television exposure, in fact it gets very little at all. While it’s a tough subject to talk about or hear about… I’ve come to realize that our battle must be shared and awareness spread throughout the world through any means possible.

I applaud you, Tim Green. I am with you, a fellow warrior trying to live our lives to the fullest, as best as we can. Teaching our families and others battling life-threatening illnesses how to stay strong and believe that someday we will get a break and beat this thing in the future. I cried and laughed with you tonight during your interview, you are very special person– God bless you.   -Rich

“Commitment, pursuing things that you want to do,” Kroft told 60 Minutes Overtime’s Ann Silvio in the video above. “That’s the secret, to me, of a successful life. Do things you want to do. And try and enjoy them along the way. And also, the importance of family.”ot-timgreeng

Tim Green with his son, Troy, during his recent interview with Steve Kroft CBS NEWS
Initially hesitant to speak about his diagnosis, Green has now dedicated himself to raising awareness of and funding for ALS. In an emotional interview with Kroft, Green began to cry. But he told Kroft they were “tears of joy.”  “I don’t know anyone more fortunate and blessed than me—even with this,” Green said.

To contribute to Tim Green’s ALS awareness fundraising campaign, visit TackleALS.com

Help be part of the search for a cure! 🌻

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For Caregivers Appreciation Month, Giving a Gift from my Heart

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My heart, my partner…the worlds best caregiver!

When I learned I had ALS, my whole world changed, because on that day, I officially became an ALS patient. Lauren’s world changed as well because, just as suddenly, she became my caregiver. I appreciate her taking on this challenging responsibility more than she’ll ever know.

For some ALS patients and their caregivers, the roles begin almost immediately. Ours was a slow creep. Over one year my ALS symptoms caused me to give up cooking, doing laundry, driving, and running errands by myself. Lauren stepped up and willingly took on the duties — even having to deal with a big learning curve, she has been here for me every step of the way. Believe me when I tell you, it’s no easy task. Emotionally and physically!

Currently, the ALS Association estimates that as many as 30,000 Americans are living with ALS. But when we factor in how many people are affected by ALS, the number is much greater. Spouses become caregivers, family members do, too, and the circle of care widens to include extended family, friends, and professional staff.

With November being National Family Caregivers Month, we have the wonderful opportunity to show our gratitude to everyone in our circle of care.

18209229_10155304863103573_732665643191088852_oBut what if you are an ALS patient? My options for gift-giving are pretty limited. Simply hopping in the car to secretly buy a card and a special gift for Lauren is no longer possible. Still wanting to do something, I asked myself, “What would make her role as a caregiver a little easier?”

The answer came in the form of giving a gift from my heart: being aware of my behaviors and of how small changes on my part can help her days to be less stressful.

Following is a list I recently found and read. I will try my very best to adhere to these… gifts that will give back to both of us:

I love you, Lauren McCabe! ❤️ 🌻

My attitude

Living with ALS means there will be stressful events, changes in symptoms, and unexpected challenges. Emotions can ignite, and it’s easy to lash out and blame whoever is in close proximity. This happens way more than it needs to.

I will keep an optimistic attitude, be open to new ideas, and be willing to adapt to changes. When offered, I will accept help and suggestions, knowing they are intended for my safety and not to curtail my sense of independence.

Be mindful

When I’m lost in thought and not paying attention to what I’m doing, I’m at a greater risk of spilling, dropping, choking, or — worse yet — falling. These make Lauren’s job of caregiver much harder.

I will continue to work at being mindful and bringing awareness to my everyday activities. If memories or worries cloud my thoughts, I’ll take a slow deep breath, bring my mind into the present moment, and pay attention to what I’m doing. 🙏🏻

Actively listen

Over time life can become routine, conversations dull, and we can tune each other out. This leads to misunderstandings and feelings of loss of personal value.

I will try to practice active listening: looking at the person speaking, smiling and responding with interest, and adding to the conversation.

Caregiving is a partnership between the giver and the receiver of care. Caregivers deserve our recognition and gratitude. So, I share a special “thank you” to ALS caregivers around the world.

Together, we can learn to live well while living with ALS.

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Above was from an article and written (with a few of my own edits to personalize) by: Dagmar Munn

Michael Franti Set Full Video – Rock For Rich

This video is from the inaugural Rock for Rich event benefiting Do It For The Love and ALSA CT.

Oct.11, 2018 – Garcia’s at The Capitol Theatre Port Chester, NY

Michael Franti w/ Victoria Canal & Carl Young

Welcome Speech & Introduction…

Set list:
Nobody Cries Alone
Stay Human
Say Hey I Love You

Thanks to everyone for supporting Rock For Rich. This was one of the best nights of my life. Having so many friends and family with me celebrating life through the healing power of live music! This was a culmination of an idea I had about a year ago, and the inaugural event exceeded my wildest dreams in so many ways.

Rock for Rich was a huge success. It can’t be done without us all working together. Music is healing, and as Michael Franti said ..and sang on the Garcia’s stage “Nobody Cries Alone!”
#DefeatALS

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Rock for Rich – What you need to know!

As we’re now just a few days away from hosting my first fundraising event, everything seems to be coming together perfectly. Who knew these things would be this much work? It certainly has been more than just a learning experience, it’s been truly a labor of love. I’m so humbled and overflowing with gratitude for all the people from the many different facets of my life dating back to when I was young child.  You have contacted me directly, purchased tickets for the event, and donated to help my cause to battle ALS. It’s times like this that I realize I have accumulated such dear friends, wonderful life long acquaintances, and family that has always been there for me. Rock for Rich has become the vehicle from which I will continue to grow my efforts in spreading ALS awareness, partnering with the best charitable organizations, and hosting fun musical events to reunite us all and to celebrate life.

With a few days to go, here are a few things to know about the event.

  • Don’t be late, as I’m proud to share with you that Michael Franti will be attending our event at 6:00! 🎸I’ve been trying to keep this a secret, so act surprised!  😉

  • Tickets for the pre party only at Garcias (5:30-7:30) will be available at the door for $60 if you haven’t purchased your tickets yet.  But we would like to know if you’re coming to get a head-count.

  • Remember to enter through the Garcia’s door, not the main theatre entrance.  Garcia’s entrance is next door to the main theatre.

  • We will be holding a silent auction as well as a raffle.  There are silent auction items as well as the list of incredible raffle items already up on the Rock for Rich website .  Online auction bids will end by midnight Wed 10/10.  Bidding will continue at the party until 7pm, so we have time to announce the winners before 7:30.  Also, we have wonderful raffle items, and raffle tickets are $10 each / 3 for $25…so please remember to bring cash!

  • We will be providing food, kindly donated by Libby Cooke Catering, Corbo’s Deli, and Chicken Joes!  Garcia’s has a cash bar.

  • Rock for Rich is NOT a 501c3 yet, so please be advised that ticket sales and any cash donations (ie, raffle) cannot be claimed as a charitable deduction.  However, any credit card donations that go directly to either the ALS Association or Do It For The Love, can be claimed as a charitable donation.  Rock for Rich hopes to be a 501c3 by our next event!

This is going to be EPIC!  I can’t wait to see you all.  If you have any questions, all info is at Rock for Rich.com.

All my love and gratitude, Rich

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My speech – Living with ALS – A patients perspective

This past Saturday I spoke at the annual ALS Conference at the Hospital for Special Care, New Britain, CT. I’ve been a patient at the ALS and Neuromuscular Clinic for the previous two years, and was honored when asked to speak about my own personal perspective on ALS. It felt right to be in front of so many other families that have been stricken with this awful diagnosis. It was very easy for me to open up and share my experience, strength and hope with all of these warriors, their families and caregivers. While I know each one of us goes through this journey differently, I can only hope those in the audience were able to identify with something in my journey. This is probably my fourth or fifth large speaking engagement, and I feel that I get as much out of doing them as everybody in the crowd seemed to.

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This is what ALS looks like… this is my new normal” 

“I don’t ask why me?.. any longer. I ask… what can I do for others?”

“How I  handle myself through this painful journey will define my new legacy”

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My awesome neurologist at the Hospital For Special Care, Dr. Charles Whitaker

 

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Click the link above for tickets!

Rock For Rich announcement …

Okay, my family and friends – please save the evening of October 11 for the inaugural Rock for Rich event! I cannot be more excited with what we have planned!  As you know, live music has always been in my DNA, it helps to heal my soul and to dig deep for hope. 

So… here I am, starting to get my message out, and trying to make a difference in this world as an advocate and an activist. I came up with the idea of Rock for Rich to help people with ALS, and others with life-threatening illnesses, by coming together with music as the backdrop to raise funds and help increase the much-needed awareness for the ALS community. 

I am not asking for personal donations, I am asking for your help to support organizations that use donations to help ALS patients and their families directly, and to donate to research for a cure. A cure will come, I know it will. It may not be in my lifetime, but I’m here to help the people that come after me and to get something accomplished while I can help.

So… here’s the fun part!

I’m throwing a private pre-show bash on Oct 11 at Garcia’s in the Capitol Theatre, Port Chester New York.  More info to come (hopefully this weekend) on all the logistics and where to purchase tickets.  In the meantime, please save the date … I would really love to see all of you that can make it to my first Rock for Rich event!

***Update to this message: please don’t purchase any tix yet for the Franti concert. We will be selling tix for both the concert and the Rock for Rich pre party event. They will be available next week. Hold tight I promise they’ll be plenty tickets released through Rock for Rich.

Here’s a music video to help entice you for what’s to come … more info soon, I promise! ~Rich

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Happy 5th Birthday Do it for the Love!

Changing lives through the power of music is a critical piece of their mission and with your help, they can reach their goal of raising $25,000 during the month of August. If you believe in the power of music and would like to make a direct impact on the life of someone faced with health challenges, click the link and make a donation of $5 in honor of our 5th year

Live Like Lou!

It was on July 4, 1939, Lou Gehrig Appreciation Day, when the longtime Yankee first baseman uttered the famous words at a home plate ceremony at Yankee Stadium: “Fans, for the past two weeks you have been reading about a bad break I got. Yet today I consider myself the luckiest man on the face of the earth.”

And, in his final sentence, he returned to his opening, saying: “So, I close in saying that I might have been given a bad break, but I have an awful lot to live for”‘

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I’ll keep trying to ‘Live Like Lou’ everyday. I truly share the sentiment of those words and will try to channel his strength till the end. Very hard thing to do from a man so larger than life.

Happy birthday America!

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Lauren McCabe and I

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Father and son.

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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…. 

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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  

 

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Ryan’s prom night, two years ago.