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Cya over there!
Rich
Sunday, March 18, 2018
Thursday, March 8, 2018
Music for the soul
Once I finally set out to publish this blog, I thought long and hard about what I wanted to accomplish by opening myself up in this format. These were basically my goals…
- Communicate to friends and family, stay connected
- Help others embrace the brighter side of their troubles. Show that it’s ok to be vulnerable
- Document my journey, and having my writings about my experiences on record
- Revisit special memories…. share some cool stories
- Celebrate life. There’s a whole lot of awesomeness to be had
- Share, discuss and celebrate live music! (because that’s my jam)
So I will continue to use this space to share my unfiltered experiences and thoughts. And not just the sad stuff, but all the great stuff. I’m grateful that you have taken any time to read my ramblings or look at my photos or check out whatever music I share..
~~~
This coming Saturday night I’ll be heading over the the Capitol Theatre to see one of the most soulful artists I know. One of the coolest dudes I’ve ever met. If you’re going the Cap on Saturday to see JJ Grey, stop over to say hey! I’ll be parked in my normal spot in the ADA section. Soaking up some music for my soul!
JJGrey & Mofro - Langerado Music Festival, Sunrise FL - 03.13.2005
Mountain Jam Festival, Hunter Mountain - 08.31.2008
Highline Ballroom, NYC- 09.28.2007
Sunday, March 4, 2018
The Mind, Body Connection
I haven't written anything here in the last week or so, but I have been doing a lot of thinking and reflecting. A dangerous yet interesting and adventurous place for me to be... in my own head. As each day passes, I'll notice a little something about myself physically here and there that was a bit different from the previous day. It really is quite mysterious and frightening all at once. Lately it's the use of my left arm strength and dexterity of my fingers. My brain is sending the signals loud and clear to my hand... "Yo arm... reach across the table and grab that water bottle over there!" well it's really quite frustrating because my arm's just like, "What was that brain my friend? I'm not picking up the signal you're trying to relay over here." Communication breakdown! (queue Jimmy Page guitar riff). I digress... but this what I've had on my mind to opine about today. This mind, body connection.
I
'm kinda blown away with this concept. This connection between the brain and the body happens on both physical and chemical levels. One never thinks about it.... it's automatic, it's instantaneous. I'm certainly not going to bore you with my findings from articles, medical journals and the consultations of amazing spiritual healers. But here it is in a nut shell, there are these little guys called "motor neurons," or nerve cells that send electrical output signals from the brain to your muscles. And these little guys are needed for your muscles to actually work and function. So yeah, they're important little guys. We all have em, honestly I never gave them enough credit for the hard work they do. They wield a heck of a lot of power. Those of us with ALS know all to well the frustration of having a brain that remembers how to move correctly, but a body that simply doesn't. For us, when these motor neurons lose their strength and die, they don't replenish. Once they're gone... they're gone, gone... and nothin's gonna bring them back. They're gone. Yeah so for me this process started almost 5 years ago with my left leg, eventually making it's way around to the right one. Nobody knows why. Nobody knows how. Heck a bunch of pretty good neurologists couldn't diagnose it for almost 2 years. Crazy.... I know. Doesn't seem to make much sense. Completely healthy one day, minding my own business and my left foot starts getting weak. And so this new journey begins. While my mind and my sight will be spared. I notice it slowly, take over parts of my body. But I'm still here, and I fight on with what motor neurons I have left! Sometimes it feels like the fight scene with the Knights in that old Monte Python movie. "It's just a flesh wound!" haha... I freakin' love that scene. So why am I depressing everyone today? I swear I'm not bitching or feeling sorry for myself. I'm actually in a pretty great mood right now. Sunday night shows rock! hmmmm.... Oscars, Walking Dead or Homeland. All three? why not! I promise not to do this here often. But I need to do what I can to help my brothers and sisters who join me in this fight. There is a cure out there some where, I'm so sure of it. But the urgency and the attention to this cause is not where it needs to be. If the cure doesn't come in my time, well I must do what I can to spread awareness for the families who will continue to suffer long after me. I knew exactly nothing about Motor Neuron Disease, as it's called throughout the rest of the world. I'm far from the only one that had no idea what it is, so I must do what I can to explain what the heck this is like and what it does to people. With so little attention paid to it in the general public, finding a cure is just gonna be that much harder to attain. So while we watch these perfect movie stars walk the red carpet tonight, think about those you love around you. We all have our battles and we can choose to spread awareness to things that really matter in this world. And so I battle on... "it's just a flesh wound!"
https://youtu.be/gXY9TuuwyL8
I'm kinda blown away with this concept. This connection between the brain and the body happens on both physical and chemical levels. One never thinks about it.... it's automatic, it's instantaneous. I'm certainly not going to bore you with my findings from articles, medical journals and the consultations of amazing spiritual healers. But here it is in a nut shell, there are these little guys called "motor neurons," or nerve cells that send electrical output signals from the brain to your muscles. And these little guys are needed for your muscles to actually work and function. So yeah, they're important little guys. We all have em, honestly I never gave them enough credit for the hard work they do. They wield a heck of a lot of power. Those of us with ALS know all to well the frustration of having a brain that remembers how to move correctly, but a body that simply doesn't. For us, when these motor neurons lose their strength and die, they don't replenish. Once they're gone... they're gone, gone... and nothin's gonna bring them back. They're gone. Yeah so for me this process started almost 5 years ago with my left leg, eventually making it's way around to the right one. Nobody knows why. Nobody knows how. Heck a bunch of pretty good neurologists couldn't diagnose it for almost 2 years. Crazy.... I know. Doesn't seem to make much sense. Completely healthy one day, minding my own business and my left foot starts getting weak. And so this new journey begins. While my mind and my sight will be spared. I notice it slowly, take over parts of my body. But I'm still here, and I fight on with what motor neurons I have left! Sometimes it feels like the fight scene with the Knights in that old Monte Python movie. "It's just a flesh wound!" haha... I freakin' love that scene. So why am I depressing everyone today? I swear I'm not bitching or feeling sorry for myself. I'm actually in a pretty great mood right now. Sunday night shows rock! hmmmm.... Oscars, Walking Dead or Homeland. All three? why not! I promise not to do this here often. But I need to do what I can to help my brothers and sisters who join me in this fight. There is a cure out there some where, I'm so sure of it. But the urgency and the attention to this cause is not where it needs to be. If the cure doesn't come in my time, well I must do what I can to spread awareness for the families who will continue to suffer long after me. I knew exactly nothing about Motor Neuron Disease, as it's called throughout the rest of the world. I'm far from the only one that had no idea what it is, so I must do what I can to explain what the heck this is like and what it does to people. With so little attention paid to it in the general public, finding a cure is just gonna be that much harder to attain. So while we watch these perfect movie stars walk the red carpet tonight, think about those you love around you. We all have our battles and we can choose to spread awareness to things that really matter in this world. And so I battle on... "it's just a flesh wound!"
https://youtu.be/gXY9TuuwyL8
Sunday, February 25, 2018
Thursday, February 22, 2018
A Warrior.
I've been throwing the term "warrior" out there a lot recently in describing myself and others battling in my world. For a while now I had been searching for an appropriate word that depicts a fighter. This is because that's the mentality I must have to push myself forward each and every day. Almost like a mantra I repeat to myself each day. It seems so silly to me sometimes. But even when you know in your heart there's no giving up, for me I have to acknowledge it out loud and hear myself say it. I've been advised by friends to come up with a #hashtag that would stand out and could describe me. The only thing that came to my mind (that wasn't already taken out there in the interwebs) was #ALSWarriorRich. Yeah I know... slick and sexy, it is not!
So in this post today I would like to write about what a warrior means to me, because it became very clear and very real to me this week. You see this week I lost someone in my world. A fighter, a brave man that looked down the belly of a beast and battled heroically till the very end. A Warrior.
I'd like to introduce you to my friend Jack. Jack was a good friend. We met under difficult circumstances about 10 years ago. We were joined in a different type of battle back then. We built a friendship. We laughed, played guitar together, learned a lot and we were there for each other for a short period of time which felt like ages. After that we would share a front row seat next to each other from time to time and have a chance to check in. Jack was strong and brutally honest and emotional, just like me. He got even stronger in the end. We weren't best friends by any means, or long time school friends. After 5 or so years we would rarely connect very much. We could see that both of our families were doing well. He posted pictures of his cute son and photos of the food he'd prepare like a professional chef. That's what happens with friends sometimes... and it's ok. Life happens and the world spins on. But I didn't forget that bond we had built and neither did he.
You see over this past year I was struggling privately with my ALS diagnosis. I told no one for many many months. One day I saw a post from Jack and he was in a hospital bed getting tests done. I didn't know what to think or how to react. At that point I didn't know that Jack was undergoing cancer treatments. He was brave and so open as he shared his journey, his fight, with his followers out in the open... he battled. As it turned out Jack was dealt a very rare, aggressive cancer.
I finally got the strength to reach out to him by text and see how he was holding up and we once again laughed and we cried. I shared with him that I was also battling a rare and terminal disease. I told him that I don't know how he did it, sharing so vulnerably to the world? I was terrified of that. He counseled me on the therapeutic and medicinal effects of opening yourself up. And not just the bad stuff. I’d see photos of his smiling face with his beautiful wife and handsome son. He was putting together a cookbook to leave behind with all of his amazing recipes. I marveled at his strength.
Well a few weeks later I decided to share my story with others in the rest of my world. The good, the bad and the ugly. After I wrote out a long post on social media telling the story of my battling an ALS diagnosis, Jack called to check in with me this time. He asked how it felt to let others in and open up about my struggle. He was right, the outpouring of love, compassion and support was overflowing. It was such a nice moment, we joked as only two friends can do. Two good people who have worked so hard to be better people, great dads with bright futures ahead, only now we were dealt really shitty hands in life that were completely out of our control. After sharing some tips and advice to stay strong, we wished each other Godspeed and promised to continue to check in every now and then.
That would be the last time I'd hear from Warrior Jack. Three or four weeks passed, and I didn't see any social media posts. The other night I saw the the most beautiful sunset from my apartment window. I could feel something greater than myself, something so peaceful wash over me and bring a tear to my eye. I went over to visit Jack's' FB page and saw the announcement of his passing. His heroic fight was over. His beautiful family by his side. Jack's pain and suffering was over. He rests peacefully now, a Warrior. A brother in arms.
The term Warrior now has the meaning I was looking for. This is how I must lead my life. Everyday. Every minute.
Rest in peace, my Warrior friend.
Saturday, February 17, 2018
Great friends, snowy night and hot music!
We had such an awesome time at The Capitol Theatre on Saturday night! I was so happy to see so many peeps still came out dispute the cold, rain and snow! It was coming down hard, so I don't blame those who didn’t venture out. I’ll catch ya next time. Next time for me will be next Sunday night at the Cap for Blues Traveler.
I'd like to give a huge shout out to my dear friends, Matt & Jill who set this all up and flew in from Miami. It was really cool to be there with our daughters. It was their first time at the Cap. Lindsey loved checking out all the Jerry photos and memorabilia in Garcia's.
The room, half full because of the weather was nice and cozy. The Cap staff is always so great and super accommodating to me in the ADA section. It really makes it a great place for me to get out and see live music with my big ole power-chair. Railroad Earth & Jeff Austin played a fantastic show!
Nights like this I really cherish as my struggles seem to slip away.
Even for just a little while...
Even for just a little while...
L-R: Lauren McCabe, Matt Bohm, Rich Lieberman & Jill Muller-Bohm
Lindsey Lieberman & Halley Bohm
Monday, February 12, 2018
Time flies...
After about a month of non-stop craziness it feels like this week we can finally relax a little bit. Without doubt this has been the busiest time since my diagnosis and it seemed to come with such a flurry. Finally gaining approval from big-insurance, I quickly made my first infusion appointment a week later. The initial treatment being 14 consecutive days of IV infusion of this newly approved drug. While at Stamford Hospital, I decided to get a permanent Port inserted in my upper chest to make these infusions easier in the long run. It was a good move, but it's still a minor surgical procedure that wasn't fun. Add in scheduled visits to various doctors, therapists (OT & PT) and a trip to the ALS Clinic in New Britain, CT and I've been running on fumes.
I'm also looking ahead and being proactive in receiving some of the medical equipment that I'll eventually need for my home sooner or later. Three of these devices were delivered last week and well, I'll just say it... it's freakin depressing that I will eventually need the use of these aids and devices. Already having lost the use of my legs has helped get me tougher emotionally. Its also helped that I do have the cool Cadillac of all power-wheelchairs (of course w/ my Dead Head sticker on the back.)
But in the end... there is no real stopping this train as this disease takes away so much in its path, the biggest being one's independence. As I do everything I can to slow down the train and fight with all my might, this is all a part of the journey. And I'm really trying everything... gov. trials, multiple modalities of therapies, trips to my Connecticut Medical Marijuana Dispensary. I even just made an appointment today to visit Mass General in Boston to see one of very top neuromuscular doctors in the world. #NeverGivingUp
Man... just typing all this out made me exhausted!
So now that I've got that off my chest, this week marks another full year with lots accomplished. Thanks to Facebook "memories" I was alerted that two years ago I brought the kids down to Florida to visit family and friends. In these photos I was able to stand on my own two feet, but just outside the frame of those images were my arm-crutches. We had a blast. My daughter Lindsey is in Miami now with her girlfriends, again staying with our life long friends Matt and Jill. I'm so grateful.
Last year at this very time I was just moving into my awesome new apartment. I cant believe I've been here a year! I have full access to everything in a big space, right in downtown Stamford. I can go out and ride around town, hit all the restaurants, stores and parks. I couldn't do that a year ago. So this has been a huge blessing.
Most importantly, just about a year or so ago Lauren came back into my life. She's given up so much to become my full time caregiver. I would be lost without her tireless strength, support and compassion. Sometime soon I'll probably write more about how this remarkable situation came about. But it's meant our little family unit is close together once again, and I don't have to fight this battle everyday all alone. It's not easy taking care of a pain in the ass like me... she's an angel!
I'm also looking ahead and being proactive in receiving some of the medical equipment that I'll eventually need for my home sooner or later. Three of these devices were delivered last week and well, I'll just say it... it's freakin depressing that I will eventually need the use of these aids and devices. Already having lost the use of my legs has helped get me tougher emotionally. Its also helped that I do have the cool Cadillac of all power-wheelchairs (of course w/ my Dead Head sticker on the back.)
But in the end... there is no real stopping this train as this disease takes away so much in its path, the biggest being one's independence. As I do everything I can to slow down the train and fight with all my might, this is all a part of the journey. And I'm really trying everything... gov. trials, multiple modalities of therapies, trips to my Connecticut Medical Marijuana Dispensary. I even just made an appointment today to visit Mass General in Boston to see one of very top neuromuscular doctors in the world. #NeverGivingUp
Man... just typing all this out made me exhausted!
So now that I've got that off my chest, this week marks another full year with lots accomplished. Thanks to Facebook "memories" I was alerted that two years ago I brought the kids down to Florida to visit family and friends. In these photos I was able to stand on my own two feet, but just outside the frame of those images were my arm-crutches. We had a blast. My daughter Lindsey is in Miami now with her girlfriends, again staying with our life long friends Matt and Jill. I'm so grateful.
Ryan & Lindsey With Dad - Miami 2016
02.10.2016 - Jill, Matt & Rich - Miami Beach
02.08.2017 - Stamford, CT
02.13.2017
Saturday, February 3, 2018
Super Sunday!
It's that time of the year... Super Bowl Sunday is here!
Are you a fan of one of these teams, the commercials or the half-time show? It's always felt like a holiday to me every year. Give me an ice cold beverage of choice... "and pile on the mash potatoes and an extra chicken wing... I'm having a little bit of everything!"
Personally I'm not a fan of either of these teams but I'm going pull for the Eagles on Sunday. My son is now living in North Philly for college and wants take part in the parades and festivities. Ryan, be chill... you'll be paying me back for any bail money should it be needed.
So today's blog post is dedicated to all the special times we share with our kids. Memories that will last forever. In honor of the Super Bowl, today's post goes to my son. These football Sundays have and will always mean so much to me because of our father, son time. My daughter Lindsey and I shared our pastsion for music together, can't wait to share those memories as well!
oh and don't feel so bad for Ryan, I also brought him up a Yankee fan... so he knows about winning championships! ;)
Are you a fan of one of these teams, the commercials or the half-time show? It's always felt like a holiday to me every year. Give me an ice cold beverage of choice... "and pile on the mash potatoes and an extra chicken wing... I'm having a little bit of everything!"
Personally I'm not a fan of either of these teams but I'm going pull for the Eagles on Sunday. My son is now living in North Philly for college and wants take part in the parades and festivities. Ryan, be chill... you'll be paying me back for any bail money should it be needed.
Ryan's first game joining his dad, the first of many over the years!
My son and I are huge Football fans, spending every single football Sunday since he was a baby either watching or attending NFL games. You see he's had the misfortunate of being raised a New York Jet fan since birth. It was a curse handed down from my grandfather. I owned season tickets for many many years and I couldn't wait to take my kid to games, just like my Grandfather used to take me. My grandpas' seats were in the ice cold upper deck of Shea Stadium where I would see one of my idols, Joe Namath play. I can still remember that amazing hot chocolate from that old thermos.So today's blog post is dedicated to all the special times we share with our kids. Memories that will last forever. In honor of the Super Bowl, today's post goes to my son. These football Sundays have and will always mean so much to me because of our father, son time. My daughter Lindsey and I shared our pastsion for music together, can't wait to share those memories as well!
oh and don't feel so bad for Ryan, I also brought him up a Yankee fan... so he knows about winning championships! ;)
@alssucks #alssucks
Thursday, February 1, 2018
Progress and pain, a lesson learned
I guess I've arrived at the point where I don't really care about what others might be thinking and I'll be vulnerable to the world by revealing what the new me, the current version of Rich looks like.
Well here ya go... This was me this past Monday, post minor surgery to place a permanent port line from my upper chest which connects to my jugular vein. Not to worry... other than being super sore I'm healing fine. This was an elective surgery which will help me to live more comfortably. My new ALS treatment requires IV infusions for about 20 days out of each month for the rest of my life. So this is what people do if they don't want to get pricked for access to a vein every time. It will stay under my skin and then all I will have when it heals is a super sexy new scar and I can make up some macho story about it ;)
But really... if you know me well, you know I would never have been caught dead posting a pic that I didn't think made me look presentable on social media. Funny how my perspective has changed over time.
I've mentioned that I didn't share with anyone about my diagnosis (other than my mom, who was with me at The Mayo Clinic) when I was diagnosed. Didn't share with many for almost a year. I didn't want anyone to see me and think of me differently. I dreaded having to go into work each day as I was progressing (at the best place to work ever!) using a cane at first. I was mortified and felt so silly. When the cane wasn't enough, I had to use fore-arm crutches. I had a huge brace on my leg. I was falling down, having to get assistance to get up. What other people thought about me affected me way too much at the time. I couldn't accept my own predicament. I was angry and scared and thinking "why me!" What were people thinking? More importantly what were my kids thinking, my family and closest friends. This was a very real struggle for me. When should I tell people I have this incurable disease? How do I tell them? So much to consider! When it came to telling my family I knew it would rock their lives. This was not something to take lightly. I agonized over it, did research, sought wise counsel. In the end when I opened up and through all of the tears, Love poured in!
Before I started to feel the effects of ALS, I took living a "normal" life for granted. The days go by and you just expect the sun to rise each morning and this process to just repeat itself... forever. Until life lands an unexpected blow to the gut that changes everything. Once I came to grips with this, I finally got to acceptance. That's when I was able to let the love of my people in. Sharing now with my large circle of friends, old and new has taught me a lesson I should have heeded long ago. I've had this old Dr Seuss quote on my Facebook profile page since the early days of facebook and on my myspace page (gasp!) before that. Even so, I didn't quite grasp the power and truth of these wise words. I get it now, so here I am... power wheelchair and all. This is the new me.
Amazing.... I still feel that love pouring over me, from you all!
Well here ya go... This was me this past Monday, post minor surgery to place a permanent port line from my upper chest which connects to my jugular vein. Not to worry... other than being super sore I'm healing fine. This was an elective surgery which will help me to live more comfortably. My new ALS treatment requires IV infusions for about 20 days out of each month for the rest of my life. So this is what people do if they don't want to get pricked for access to a vein every time. It will stay under my skin and then all I will have when it heals is a super sexy new scar and I can make up some macho story about it ;)
Stamford Hospital 01/29/2018
I've mentioned that I didn't share with anyone about my diagnosis (other than my mom, who was with me at The Mayo Clinic) when I was diagnosed. Didn't share with many for almost a year. I didn't want anyone to see me and think of me differently. I dreaded having to go into work each day as I was progressing (at the best place to work ever!) using a cane at first. I was mortified and felt so silly. When the cane wasn't enough, I had to use fore-arm crutches. I had a huge brace on my leg. I was falling down, having to get assistance to get up. What other people thought about me affected me way too much at the time. I couldn't accept my own predicament. I was angry and scared and thinking "why me!" What were people thinking? More importantly what were my kids thinking, my family and closest friends. This was a very real struggle for me. When should I tell people I have this incurable disease? How do I tell them? So much to consider! When it came to telling my family I knew it would rock their lives. This was not something to take lightly. I agonized over it, did research, sought wise counsel. In the end when I opened up and through all of the tears, Love poured in!
Before I started to feel the effects of ALS, I took living a "normal" life for granted. The days go by and you just expect the sun to rise each morning and this process to just repeat itself... forever. Until life lands an unexpected blow to the gut that changes everything. Once I came to grips with this, I finally got to acceptance. That's when I was able to let the love of my people in. Sharing now with my large circle of friends, old and new has taught me a lesson I should have heeded long ago. I've had this old Dr Seuss quote on my Facebook profile page since the early days of facebook and on my myspace page (gasp!) before that. Even so, I didn't quite grasp the power and truth of these wise words. I get it now, so here I am... power wheelchair and all. This is the new me.
Amazing.... I still feel that love pouring over me, from you all!
Thursday, January 25, 2018
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
Ellen Meets Anthony Carbajal - The Ellen showl
A Big Surprise from Ellen for Anthony Carbajal- The Ellen Show
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.comEllen Meets Anthony Carbajal - The Ellen showl
A Big Surprise from Ellen for Anthony Carbajal- The Ellen Show
Sunday, January 21, 2018
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
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 😎
Friday, January 19, 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....
As of now I’m living on borrowed time....
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...
Know that we are loved!
“So speak kind to a stranger
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
Rich
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”
Welcome to my new Blog
My name is Rich, and I'm living with ALS.
Emphasis on the living part.
Talking about my life lately 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.
Emphasis on the living part.
Talking about my life lately 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.
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.
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.
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