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.
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
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….
Lindsey pre-prom w/ Dad!
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
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.
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
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.
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
