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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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!

New Rock for Rich website is up and running!

https://rockforrich.com

 

Okay, my family and friends… here’s the deal:

Thursday, October 11 is the inaugural Rock for Rich event!

We have rented out Garcia’s at the Capitol Theatre from 5:30pm to 7:30pm before the Michael Franti & Spearhead concert for an EPIC pre-show fundraiser.

Here are the instructions to get your tickets to the event:

**IMPORTANT: Don’t buy basic GA tickets, you need to get to the Rock for Rich tickets by using promo code (rockforrich) at the bottom of the Ticketfly page

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If you want to come to the fundraiser party ONLY from 5:30-7:30, and not stay for the Michael Franti concert,  purchase tickets with the link below to use PayPal or credit/debit cards:Pre show party only

If you can’t make it at all, please consider making a donation directly to either or both of these wonderful foundations through the donation links below. These donations will get added to our Rock for Rich fundraiser goal.


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Rock For Rich t-shirts will be available at the party, or on my website very soon.

 

 

Help me to try and 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.

Let’s help ALS patients and their families directly and 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.

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Garcia’s at the Cap

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A true Warrior, never to be forgotten

This past week a very special friend of mine lost her epic battle to a terminal disease. You see… my friend Heather and I had recently established a very special connection over the past couple of years in that we had a common bond in fighting our fiercest to live our lives to the fullest and never ever give up. Heather lost her battle to cancer last week. Leaving behind a wonderful family, husband and two precious girls.

30709330_10156426908668573_8887517959518420992_oI wanted to share with you the post I left on her page because it really expresses my thoughts and feelings about what it means to connect with other people while you struggle within your own battles. Whatever they are.

Today we mourn the Queen of soul. To her family, friends and so many people… Heather was a Queen of hope.

Rich Lieberman’s post in memory of  Heather Sabella.
August 12 at 1:51 PM · Facebook

Heather was a light that shined so brightly, and will always be an inspiration to me as I continue to fight my battle to stay alive against ALS. The last time we spoke and I had the chance to give her a huge hug, we looked into each others eyes and promised to each other we were going to keep fighting until there was no fight left in us.

Early on while I was fighting my own battle privately with my family, it was hard to share my story with friends and acquaintances far and wide. It was Heather’s courage and honesty in sharing her own battle with the rest of us, that helped me to gain the strength to finally come out and share my life-threatening illness. She explained how much relief and strength it could provide and I thanked her so much for such great advice. Our messages to each other when one of us posted something were truly heartwarming and very special.

The day she passed I woke up feeling a sense of relief somehow. I started to write in my blog and share how lucky I was to be surrounded by such amazing family and friends. Before I had a chance to post it, I received a text message that she had passed peacefully that day. I want to believe that my peaceful feeling was a sense that she was finally free from the pain of her struggle.

That very night I went to see Band of Horses at the Capitol Theatre. Some years ago, I saw her and Bill together at the Band of Horses show at the Cap. It was before all of our troubles began and when things were right in this world. We all danced and enjoyed the music, for it was music that was our connection from the beginning. Was this just a coincidence? I think not, I know not. I decided to go to the show in her honor, and say a prayer for her and her family, and to remember the times when we were both healthy. I now go to shows in my power wheelchair as a quadriplegic.

Heather was not a quitter, I looked to her for strength and I still do. A wonderful person, friend, mother and wife. My heart goes out to Bill Ogg and the kids. She will always be with you. The universe has lost one of the really good ones.

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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

Sometimes it’s just the little things…

… and sometimes if you have ALS and you’re driving along, around town minding your own business in your power wheelchair… it could be the bigger things that can put a smile on your face! It’s really just as easy as looking up to the sky every now and then. 😜

I had such a great day having cocktail hour on a gorgeous Friday Night in Stamford last night with Lauren. We sat outside, had some adult beverages while listening to an acoustic guitar player. It was so great to be out.. I think we might just make this our weekly Friday night ritual going forward. Also, was happy to run into an old boss from Apple as well.

You certainly can’t blame me for wanting to get my mind off ALS. (thanks, Lauren & Marilyn!)

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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Love and happiness… a photo album Vlog

Been going through lots of old pictures these days. It’s fun putting some old photos in new digital albums. I have so many great pictures and memories

I haven’t put up anything new here on my blog lately… so I a put together a video while I was going through my photos. One of my favorite Beck songs is the video soundtrack.

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.

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

My Story – Video Update!

After a year of blogging which led to video blogging and trying to figure out this whole world of blogging and connecting virtually to others, it’s time that I share an update and zero in on the purpose and intention for this page. I’ve put together a little video to kick off 2019 and to relaunch my presence on the Internet. Here it is…

I hope you will watch and follow me, subscribe, like, comment and share!

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My name is Rich, and I’m living with ALS.

Emphasis on the living part. 

Talking about my battle or sharing in general about my journey hasn’t been real easy for me. Which is kinda surprising since I’m generally an extremely social person, like to talk and have always loved to write. I haven’t written a blog in years so I find myself back here in an attempt to connect and share with others. This time I’m not blogging about Live Music, my favorite pastime, but something much more personal. My own journey to live through the most trying times I’ve faced to date in this wonderful life. So if you’re here, reading this… I thank you and I will attempt to be honest, forthcoming, informative and hopefully sometimes witty. The subject matter will revolve around my attempt to navigate the dark, murky and scary waters of a condition for which there is no cure, so there’s that. My goal is to focus on the challenge to find a cure, and enjoy life till there is one.

With that let me catch you up a bit.

If you are reading this, chances are you’re a family member, a friend, an acquaintance of mine or you or someone you love is facing a diagnosis of amyotrophic lateral sclerosis (ALS), or Lou Gehrig’s disease as it’s more commonly known.

First of all I want to assure everyone that I’m currently doing everything I possibly can to combat this ass kicking disease and if you’re here on this blog because of your own struggles against ALS, you’re a family member, or caregiver to someone… I am here to tell you that you are not alone. All of the emotions flooding in right now are all appropriate and have been experienced to some degree by each and every one of us affected by ALS.

I was diagnosed with ALS at the age 53. But my symptoms began a few years earlier and can be traced back to the winter 2014. It was during an ice storm one morning on my way to work that I slipped and landed hard in the cold rain and snow. I thought nothing of it at the time, I picked myself up and kept on walking. This would be the first of many days to come with a stumble or fall. The journey toward a diagnosis was a long one with more than a few wrong turns. In the end, after almost two years of countless doctors and tests, all that was left on the table was ALS.
While first searching for answers, I kept telling myself it couldn’t be anything serious. I took a major header and must have injured myself. After a few months I started to develop a bit of a limp.  Off I went to the doctors and the basic tests and work-ups showed nothing of any concern at all, Physical Therapy was prescribed and I was on my way. I didn’t know anything about ALS besides the famous speech by Lou Gehrig at Yankee Stadium and then of course the Ice Bucket Challenge with everyone sharing hilarious videos on social media. I felt just fine in general, so it couldn’t be something like that? As I eventually learned, every ALS case is unique. There are similarities, but the disease affects individuals in different ways. Over the months that we were zeroing in on a diagnosis, I spent many hours on the Internet searching for information about various neurological disorders.

When my diagnosis was confirmed at the Mayo Clinic in snowy Rochcester, Minnesota it felt like a door slammed in my face. Months and months of testing were over. But I didn’t like the answer. Grief, anger, hopelessness, and fear were just some of the emotions that washed over me. No one wants to hear that they have an incurable illness. But when you think about it, life itself is 100% fatal, right? You’ll excuse me for not taking much solace in that at first. But it’s true we are all living on borrowed time. The faster I came to accept this fact, the faster I could allow love and joy back into my life and start to fight. And as with every other challenge that I face, I just take this one day at a time. Sometimes even just a minute at a time.

Now, here’s the good news. I have access to resources that are helping me with daily living. And here’s something I have learned: having ALS has allowed me to slow down and spend more time with my family. I’m still doing so many of the things I like to do, going out to see music is a big one. Reconnecting with friends both old and new. My priorities have changed somewhat in that I realize the value of relationships more than ever before. ALS may limit my activity but it can never take away the love of my family and friends and my relationships with them.

My life has taken an unexpected turn but I am still me. ALS is now part of my life but it does not define me. I’m ready now to let others in. To be an advocate, help others and help drive the movement to a cure.

So this will be the space where I will sometimes share my unfiltered experiences and thoughts. And not just the sad stuff but all the great stuff. There’s a lot of awesomeness to be had.