Week One of Radicava: Strongest I’ll Ever Be

“Everyday is the strongest I’ll ever be, and also the weakest I’ll ever be again ” – Anthony Carbajal

Thanks to all who have checked out my blog. I’m grateful for the encouragement and feel your support! It was kinda scary putting my words to the keyboard and being vulnerable. It’s been a long strange process, and I tend to watch each card I play, and play it slow.

My first week of this new Radicava treatment is going really well so far. Stamford Hospital and the nurses in the infusion center have been wonderful in making the process easy for me. Lauren has been with me everyday and It feels great to be doing something that can potentially slow down the progression and help me live with ALS. I’m optimistic and excited to try something new! Of course it would be awesome if this new treatment for ALS worked to reverse or cure this disease. But if this can some how slow down the progression for me and for my fellow ALS Warriors… that’s a huge start.

We need to be around when that major breakthrough happens…  And it will happen!

As I was sitting there yesterday receiving my infusion, I remembered the powerful story of Anthony Carbajal, an incredibly inspiring person who has shared his story with the world so brilliantly, so bravely so full of optimism. Anthony’s quote which I shared above, has stayed with me. I think about it most everyday. He’s a brilliant photographer, diagnosed with ALS. Unlike myself, he has the genetic kind of ALS (Familial ALS) so it runs in his family. I started following his instagram two years ago. His photos are such wonderful images of Life. I urge you to check him and his work out on his website. He, along with many others passionately impart their wisdom to many people on the daily. Many of these warriors I will spotlight from time to time in this space.

Please do take the short few minutes to watch this incredible short documentary. It’s so powerful, educational and emotionally moving. You won’t regret it.

Anthony Carbajal Documentary: Strongest I’ll Ever Be

After being handed a heartbreaking diagnosis of ALS, award-winning photographer Anthony Carbajal confronts the disease that robs him of his abilities and his future, in order to create a meaningful life during what time he has left.

Anthony’s Instagram: https://www.instagram.com/carbajalphoto/Anthony’s Website: http://anthonycarbajal.com/Phil’s Website: http://PhilEbiner.com

Ellen Meets Anthony Carbajal – The Ellen showl
A Big Surprise from Ellen for Anthony Carbajal- The Ellen Show

I’m finally approved… the first new treatment in 22 years for ALS

So as you may or may not know, there is no cure out there for anyone with ALS.

Bummer I agree wholeheartedly of course. But progress is being made everyday. I’m more than confident a cure is just years away. I’m certainly gonna do my bit to be here when that happens or help those long after me to have a chance. I’ve spent hours upon hours doing research on everything and anything out there worth trying. There are great strides being made. I’m most interested in what Stem Cell discoveries will bring. I’m fighting for the right to try a specific Stem Cell treatment developed in Israel and I’m fascinated with that. This treatment just last month received approval to move into a Phase 3 study here in the US. That’s really awesome: It means they’re one step (a really big one at that) closer to approval from the FDA.

Now I should tell you that the FDA has approved only one single drug for ALS patients, and that was 22 years ago (since then, nada.) That drug, it’s said, could possibly add a few more months for patients but no one I’ve ever met is excited about it. So that was the state of FDA approving anything significant until this past May 5th, 2017. Then, out of nowhere, medical professionals in the US were  informed that some new amazing drug trialed in Japan, called Radicava extended life expectancy in ALS patients by 33.3% (that’s by a third, for those playing at home).

Wow, I said… sign me up. I’ll start now, let’s do this. I’ve got graduations and weddings and future grandkids to attend to.

Well it wasn’t that easy. Since this news was out of nowhere the US medical community and especially the always-a-pleasure-to-deal-with insurance industry were stumped as to how to get this into the hands of patients that need it and were willing to take it. Wouldn’t everyone with ALS be willing,  you ask? Well maybe not, as this treatment is administered via ongoing intravenous infusions. 

Here’s the process: Patients start with daily infusions for two weeks and then have two weeks’ rest.  Then another 10 days of infusions, and another two weeks’ rest. This process repeats itself… for the rest of your life. 

The next hurdle: who will pay and how to pay for this treatment? The cost of each Radicava infusion is $1,000 and treatment costs $146,000 annually. So…. Insurers are scrambling, trying to figure out how avoid covering. it. Patients that are Medicare and Medicaid are the lucky ones so far. Those people. (including myself) are now getting this approved and paid for. This is the big piece that is holding up the process to get it to folks that need it.

So…. after many many calls and pleas for approval, I was finally notified that I was approved last week. This is more than five months after the first patient started treatment in the US. There are now about 1000 patients nationwide getting the infusions at infusion centers across the country. I feel lucky to finally get approved, even with that frustrating delay. There are many more patients awaiting approval still!

And so… tomorrow, Monday January 22, 2018 I will be at Stamford Hospital at the infusion center and something that may help to keep me around 33.3% longer will be flowing through my veins.

I’ll keep ya posted 😎

With the goods!     01.22.2018

    Sharing my Battle with the rest of my World (Repost)

    Originally posted to Facebook October 17th, 2017 

    This post may be a bit heavy for some. Fair warning….
    It comes from love.

    Today I felt a calling to begin to share and express my very personal life to my extended family of friends. I think the time has come to share my challenges. I need to face them in the open, if for nothing else that if it only helps even one other person then it’s worth the world. I may be a sensitive dude but I don’t do this personal stuff well.

    Perhaps I’m inspired by all of the selfless love and sharing from my many brave friends sharing openly in their own grief. Helping others while helpless themselves by storms or illness and things mostly out of their control. But still I feel we all are here to be of service, to be helpful to others in this time of unknown craziness in this world. So hard to do, so easy to say.

    So I too have decided to step up and help if I can. I can’t do much physically. But what I can do is help and share a piece of me that I’ve been holding in and keeping close. I can no longer not offer to share what I’ve been through and what I’ve learned and lost these last 5 years as it might just help someone else.

    As of now I’m living on borrowed time….
    But we all are really.

    To those old time friends from high school and college, to my Dead Head comrades, to all my wonderful new and old internet family that I’ve grown to love through music and our love of life, to my Apple family and friends…
    this will be news to you.

    I have been battling ALS (Lou Gehrig’s Disease) for likely 4-5 years now. If you’ve seen me, you’ve seen the progression from a small limp to my current state of disability in a power wheel chair. I’ve been afraid, sad, pissed, even grateful sometimes. It runs the whole gamut. But I see the world differently now and I’ve finally arrived at acceptance. That wasn’t easy and it breaks my heart to see my kids and family not be able to get there yet. I love you all so much!

    To my closest friendships and my fearless family that have been holding me tight during this scary and helpless ride… you are my angels that will take me home.

    I want to say just for now, fight your fight. Whatever it may be. No matter how small or large. Be there for others and let them be there for you. Depression comes and goes but I’m just now learning to get my ass out and see Live Music again and maybe even more of this beautiful world while I still can.

    I’m not looking for sympathy (although kind words make me feel very nice) I’m looking to be someone to share mutual support. Someone you can talk to. For all of you, the ones with the unlucky breaks. Let’s fight. Together. As one. We will find those moments. Those moments that are few and far between that get you to forget we’re sick, or lost our home to tragedy and laugh, Love and feel Joy. Maybe even get up and dance again. 

    Know that we are loved!
    Peace & Love

    p.s. I will not be putting up daily updates or long articles and things or asking for money. I may start a blog for those who may be at all interested in my progress. I’m hoping I’ll be around a few more years but no one knows this… I’ve lived a freaking fantastic and amazing life, an incredible family and the unbelievable chance to rekindle the love of my life. My two kids will be that part of me that will live on as the Angels to carry me home. 

    “So speak kind to a stranger
    Cause you’ll never know
    It just might be an angel come
    Knockin’ at your door

    And I’m waiting on an angel
    And I know it won’t be long
    To find myself a resting place
    In my angel’s arms”

    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.