…a short vlog post to celebrate the coming of a new year.
Tag: als info
A long December and there’s reason to believe…
Maybe this year will be better than the last.
⬆️ Video 🎥 Blog Post ⬆️
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
❤️ 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.”
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! 🌻
For Caregivers Appreciation Month, Giving a Gift from my Heart
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.
But 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.
Above was from an article and written (with a few of my own edits to personalize) by: Dagmar Munn
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
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.
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”
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”‘
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!
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!
My presentation @StanfordMedX “street photographer, with a debilitating disease called ALS. Anthony speaks on the importance of vulnerability and how it allows him to be a “more abled” photographer.” https://t.co/l8uts5dre4
— Anthony Carbajal (@carbajalphoto) June 5, 2018
His Documentary: “The Strongest I’ll Ever Be”
Thoughts & Thanks
A thanks to all for the contributions during ALS Awareness Month in May!
~Repost~
Here is the post I made on May 1st. It’s my story about my journey with ALS, if you missed it you can check it here:
A wonderful recognition from The ALS Association, CT Chapter!
On 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!
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 Bridgeports 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 Gehrigs disease, on his 40th birthday. David then became chairman of The ALS Association Connecticut Chapter. Below are some examples of Davids 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!
2018 – original blog post unchanged
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.
