Posted by: Rob Irvine
Date: May 27, 2015
We live in a small, rural town where pretty much everyone knows or at least knows of everyone else. Other than three years, I have lived here my whole life. There can certainly be downfalls because of this but the positive experiences outweigh the negatives by far.
We waited a few months after my diagnosis to talk openly about it because we wanted to first tell our three girls. When we did break the news, I was attempting to tell our close friends first, in person. This was very difficult for me as I always felt like I was ruining somebody´s day. When this became overwhelming, I decided to write an email to our friends and aquaintances. The support that we have received since has been unbelievable.
First, our friends secretly took up a collection and presented it to us as a surprise to help fund a trip to Disney World. Next, my friends at work threw a fundraiser and then the whole community kicked into gear. Our church opened a fund for donations to help offset our expenses, numerous fundraisers and even a home renovation to turn one bay of our garage into a first floor handicap accessible master bedroom and bathroom. We have constant support from friends that feed me lunch (PEG tube) when Melissa is working. We also have friends that mow the lawn in the summer and plow the driveway in the winter.
ALS is a real struggle but the support from our friends and community sure helps lighten the load. I don’t like to think about where we would be without that support right now. ALS is an awful disease that not only affects the person with it, but also the whole family. The list of negatives is infinite but at the same time it has shown my family the true good in people.
Posted by: Rob Irvine
Date: May 11, 2015
-by Rob Irvine
On Saturday, May 2nd my wife and I had plans to go see The Tenderloins, aka the Impractical Jokers, at their Foxwoods show. Our friend pulled some strings to arrange a meet and greet as well. All seemed fine until it was time to get me in my wheelchair.
Although we use a sit-to-stand lift, getting in my wheelchair is always a challenge. With one leg shorter than the other due to a broken hip two years ago it’s always tough to get into the wheelchair straight. Once in, my daughter was helping sit me forward but never put my legs down and this put pressure on the footrest and it broke. Now nothing would hold the footrest off the floor. In stressful situations my nerves go wild and my muscles, especially in my legs clench up to the point where it is painful. I was sure that the night was ruined.
After some frustration my wife (Melissa) found a bungee cord and tied the footrest up enough to drive the wheelchair but my feet were still dangling and I couldn’t drive because of the tilt angle and also the fact that I was slouching from not having a useful footrest. Off we went.
Stressed out, nerves shot and running late, we were on our way. Luckily, another friend had VIP valet service set up for us so arriving went great. Now came the tricky part, navigating through a crowded casino with my nerves shot, legs straight out from having clenched muscles and Melissa driving my wheelchair while walking beside me. I don’t know how she did it, navigating through the crowd, through doorways (even disengaging the wheels to push me through narrow ones) and down ramps but we were in line to meet the Impractical Jokers!
When they came in we were first in line. Other than being hilarious they were very sincere and listened to everything we had to say. Brian Quinn “Q” was very interested in how my eye gaze computer worked. They told Melissa that meeting us made an impact on them.
It was a great time meeting them and a hilarious show afterwards. I am very grateful to our friends that made this happen and most of all thankful to Melissa for going above and beyond in not giving up on the night with everything she had to do after things went wrong.
Posted by: Team ALSF
Date: February 27, 2015
We have all been there before. White knuckles wrapped around the steering wheel, constant glances at the clock, turning down the radio while you go over your mental packing list. That frantic ride to the airport, the one that began fifteen minutes later than originally planned. We love that moment of relief that happens the moment after the airport is in sight; a sense of “we made it” is short lived because we know the journey has just begun.
The daily life of ALS is constantly filled with challenges for everyone involved. It is not just me, the patient (I hate that word) but for everyone around me. This is never more true than when travel, especially air travel, is on the horizon. If caring for someone with ALS was like juggling, caring for someone with ALS and traveling would be like juggling while riding a unicycle on a treadmill.
Thanks to my acrobat-like girlfriend and a group of dedicated friends I was recently able to travel to NYC, the city I called home for almost seven years. The trip was the perfect blend of business and pleasure. We had a jammed packed itinerary, but the highlights were the A Life Story Foundation meeting with our NYC chapter and a dear friend’s off Broadway premier.
A late morning flight out of Milwaukee meant a relatively calm start to the trip. That is only because I am leaving out the hours my girlfriend spent packing the night before. Remember, she is not just packing for herself (a challenge within itself) she has to pack my clothes, medications, equipment, and enough feed for my feeding tube to last for four days.
I used to scowl at the family of five trying to maneuver their way through the security line with their car seats, baby bottles, and what seemed to be more little shoes than there are feet. Let’s just say I kindly smile at them these days. After Betsy (the girlfriend) explains why she has bottles of water and Boost cartons and I am done getting felt up by the TSA agent, we are off to our gate.
If there is one good thing that comes with ALS it is being able to board the plane before everyone else. Before ALS I was a frequent traveler and typically avoided Southwest Airlines because I hated the “cattle call” boarding required. However, now I fly Southwest exclusively. Their customer service from the ticketing desk to the ramp operators who are responsible for handling my 250 pound wheelchair are always incredible kind and professional.
Once our boarding passes are scanned I zip down the jet way and say good bye to my wheels as Betsy helps me with the short walk to the first row of seats. Once I am seated and she reclines my seat and puts on my foam neck brace, she scampers back to the chair to take off the headrest and seat cushion, both of which are very important and could be easily damaged in the cargo hull.
Imagine that feeling of anxiety and that increased body temperature that occurs when you trying to secure your items in the overhead compartment. Standing in the aisle, people looking and wondering why you are moving so frantically, all the same while all you want to do is sit down and get this plane in the air!
As the jet taxis to the runway, Betsy has her hands on my forehead so my head does not fall down due to the weakening of my neck muscles. We always get nice smiles and small talk from the flight attendants who are seated a few feet in front of us. There is no better sound than the intercom bell that indicates we have been cleared for takeoff. It is not the excitement of the destination, it is actually the speed that the jet hits in order to take off, the “g” forces gently press my head against the seat until the moment we land in the Big Apple.
Posted by: Team ALSF
Date: February 5, 2015
Anyone who is familiar with ALS knows that it is tenacious and a master thief. It robs its victims of the physical use of their bodies, but maybe even more damaging is how it rapidly steals away elements of life like privacy and dignity. Once the initial shock of hearing that you have 2 to 5 years to live starts to settle, a whole other category of stress begins to mount by the minute.
What am I going to do about my job? Will I get married? Will I have kids? That’s where it starts and somehow you find yourself wondering, What if I can’t wipe my own ass? I assure you that this is not listed in the ALS brochure.
There is a term that my girlfriend and I use, “the new normal,” which I think is paramount in staying ahead of the daily challenges that a progressive disease presents. Unlike other diseases, there is not much of a treatment plan given to those with ALS. And if lack of treatment wasn’t frustrating enough, its progressive nature makes ALS a moving target. With my body and abilities ever changing, we are forced to constantly adapt. It seems as though the moment the ‘new’ way of doing something becomes normal, it’s time to adapt again to the ‘new’ new normal.
These days I pee like a 4-year-old boy. There, I said it. For anyone that has potty trained their son, the scene of a bare butt, pants around the ankles, little person standing in front of the toilet is a familiar sight. That is my new normal. Without the use of my hands or arms I need someone to unzip my pants and pull them down (and then back up after I’m finished) every time I go to the bathroom. You can imagine the challenges that are presented when out and about with friends and family. Lets just say I have seen my share of women’s restrooms.
Fortunately for me, I have been and remain to be an extremely positive person before and after my diagnosis. Sure, having to have someone cut up my food or feed me while at a restaurant was difficult at first, but as time went on and I continued to surround myself with the right people, it became second nature. As the disease has progressed I do need more help throughout the day from the moment I get up to the moment I go to bed.
Thanks to the ‘new normal’ mantra, my family and I have always maintained a very accurate and candid view of ALS and how it affects us all every day. This positive thinking applies to every process from brushing my teeth to having my hands placed on my desk so I am still able to work on A Life Story Foundation every day.
Posted by: Team ALSF
Date: December 2, 2014
This summer, baseball celebrated the 75th anniversary of Lou Gehrig’s Luckiest Man in the World speech. Seventy-five years since the man who never missed a game was mysteriously afflicted by Amyotrophic Lateral Sclerosis, a disease that few had heard of and even fewer understood. Seventy-five years in which very little progress has been made in understanding the disease and almost no progress has been made fighting it.
In most years, the publicity surrounding the 75th anniversary would have been the most ALS would receive. In fact, the spotlight shone on the disease that weekend was probably the most it had ever received. And at that moment no one could have imagined how drastically that was about to change.
Less than a month later, Facebook status feeds and Twitter timelines began to fill with videos of people dumping buckets of ice water over their heads, challenging others to do the same. It would become known as the ALS Ice Bucket Challenge, and it was larger than any one person. Pat Quinn, an ALS patient from New York, started it. But the face of the social media phenomena was, like Gehrig, a baseball player. It was Pete Frates, a former captain of the Boston College baseball team, and his circle of supporters, who sent the challenge soaring to new heights.Over the next couple of months, more than a million videos appeared online. The ALS Association received more than $125 million in donations, not to mention the millions more that were donated to other ALS organizations, including my own. People who had never given money to the disease before helped raise funds and perhaps even more importantly, awareness of the disease.
At A Life Story Foundation, the organization I founded after being diagnosed at age 30, our purpose is to Rewrite the End of ALS. There is still much work to be done, but the ALS Ice Bucket Challenge is our greatest chapter yet. For that reason, Pete Frates is my nominee for SI’s Sportsman of the Year. Like all ALS patients, the disease does not define Pete. It is only part of his life story, one in which he refuses to admit defeat and continues to fight his own personal battle while helping lead the struggle for all of us.
I am not the only person to suggest that Pete be named SI’s Sportsman of the Year. Phil Stacey and Mike Lupica have also supported the idea. And I am asking you to support it, as well. Please help us honor Pete for his role in Rewriting the End of ALS by making the attached image your Facebook and/or Twitter profile image and share this nomination through social media with the hash tag #FratesSOY.
To learn about Pete’s story, watch our video here.
Posted by: Team ALSF
Date: November 8, 2014
There are so many scary life experiences and dramatic changes that lie ahead of anyone diagnosed with ALS. When you are at your earliest symptom, which may be as innocent as a twitching finger, the idea of not being able to walk simply seems too far down the road to be possible.
I remember my earliest ALS events, meeting other pALS who were further along in progression was a commonplace. There were those whose speech was severely affected and those who were wheelchair bound. I remember having so many thoughts that were very similar to “I just can’t see that happening to me.” I can’t explain why I felt that way, it is certainly not a thought based in logic; after all, I too have ALS.
They say that bigger is better. But when it comes to wheelchairs, bigger is scarier. As my legs have weakened over the past few years I knew the likelihood of needing a wheelchair was becoming more of a reality than I ever imagined it would be. First, I bought a lightweight manual chair that my friends and family could fold up and toss in the trunk whenever we were going somewhere that required excess walking. This lightweight aluminum chair took a beating as it traveled with me everywhere from airports to subway stations, but it definitely served its purpose. My only two complaints about the chair were – 1, because of its size it always made me feel small and 2, it always required someone having to push me.
When it was time to upgrade to a larger more substantial chair, my anxiety graduated to a bigger size as well. I remember the wheelchair technician measuring me like I was buying a custom made suit. The uniqueness of the chair and the customization definitely provided the slightest bit of comfort in what was an overly uncomfortable and difficult situation. In my mind, I wanted a chair that was sleek and small like a sports car. Having said that, you can imagine my shock and fear when he showed me what the final chair would look like. My vision of a sleek sports car was crushed by a transformer-like machine! After nearly 6 weeks of waiting, delivery day was finally here. I remember sitting anxiously in my living room as he walked in behind this Big, Black Behemoth, controlling it with a joy stick straight out of a 1980s arcade.
As I sat in my new ride for the first time I had to admit, this thing was super comfy. The tech walked me through all of the bells and whistles and explained that this was truly one of a kind. Having no use of my hands, my new custom built machine would be completely controlled with my right foot. I was able to cruise around my hardwood floors with ease. To increase the speed I press my foot down just like that sports car I was hoping I would get. This wasn’t just a wheelchair, it was a term I had dreaded, and it was a power chair.
It wasn’t until weeks after having the chair I started to realize that it had given me a tremendous amount of independence I had previously lost. When I was using that lightweight chair I was only in it until I found somewhere I could sit more comfortably which meant, if I were to go to a friend’s house it was the chair from the car to the couch and that was my spot for the remainder of the night. I was and am still able to walk short distances, but now when I sit down I am by no means stuck. My newfound movement has been welcomed and maybe even admired by my close friends and family.
I must admit that one of my new found, fun filled activities is actually going to the grocery store! Despite the horrible florescent lights I love putting the pedal to the metal and cruising down the aisles and whipping around shopping carts and Screaming kids!
Posted by: Team ALSF
Date: August 21, 2014
5. We are having our Magic Johnson moment. When the basket legend announced that he was HIV positive, he instantly brought the disease into every home in America. Overnight, everyone knew someone with HIV. The ice bucket challenge does not have one principal figure though, which truly makes it that much more magical.
4. There is a bottomless bucket. When this phenomenon began it went from local to global in an instant that has lasted over 3 weeks with shows no signs of drying anytime soon. Our online donations have continued to grow every day.
3. Exponentially viral. Celebrities making mistakes or a cute kid slurring his words after a trip to the dentist go viral and then they go away. The ice bucket challenge refuses to go away. That is what is so brilliant about the challenge, every time you see one, that means you are going to see another and another. It might have gone viral early, but the ice bucket challenge is now a permanent fixture in pop culture.
2. Awareness doesn’t write checks, people do. It is because of the ease and the large part in our daily life that social media plays, that everyone saw and more importantly shared the ice bucket challenge. Facebook reported that over 12 million people had posted, like, or shared the challenge in the past 2 weeks. Without a single dollar coming in, I and the rest of the ALS community would have called that a monumental success. But not only are millions of people engaged, they are giving too! The ALS Association has reported receiving over $40 million in donations since July 29. I would prefer that the donation go to a life story foundation or directly to our research partner, ALS TDI.
1. We are going to be on Ellen! Well, not me personally but ALS and the ice bucket challenge are going to be on season premier because of a truly beautiful life story.Anthony Carbajal shared his soul with the world and what it is like living with ALS and caring for someone with ALS. His words and the emotions are so raw it well without a doubt, change the way the world sees ALS.
I have never been more confident, than I am right now, that we are going to Rewrite the End of ALS.
Posted by: Team ALSF
Date: May 29, 2014
I fully understand the challenges ahead of my team at A Life Story Foundation as we try to raise awareness and create action around the horrible disease that is ALS. This challenge was never clearer than a couple of weeks ago when I was surrounded by, of all people, medical professionals.
After a long day of traveling and a long night (the good kind) night of eating and drinking with family I woke up feeling less than $1 million. I did, as most do right after they wake up, walk towards the bathroom. Unfortunately, right before entering the bathroom I tripped on a wire hanger (I’m sure there is a “Mommy Dearest” reference in here somewhere) and quickly fell to tile floor. As I have almost no use of my arms, I used my head to break my fall. The details after this point have been provided by others who were there as I do not remember much after the hanger.
My girlfriend saw the whole thing unfold in slow motion just a few feet in front of her. She screamed! She quickly picked up my head as I was unconscious. I cannot imagine how scary all of this was, all happening so slowly yet so quickly. She called 911, she called my parents who live a few miles away. Everyone was on their way!
The EMT’s arrived in no time at all. This is due in large part to having a hospital a few blocks away. My mom arrived right behind them, driving slightly faster than she normally does I’m sure.
“He has ALS!” It was said early and often to the paramedics and firemen. After all, this is the extremely important part of this puzzle. I imagine they are trained to assess and evaluate every situation as quickly and accurately as possible. So why would they not want this valuable piece of information?
I was talking by the time they arrived, but because of my speech which has been directly affected by ALS they thought they may have had a stroke because I was slurring my words. Nope, no stroke, just ALS.
After evaluating my speech, then came the part in the performance where they attempted to pull me up by my arms like I was a buddy of theirs who fallen on the basketball court. “No, you can’t do that!” screamed my girlfriend.
It was obvious, there was a complete lack of knowledge. There was one paramedic with a laptop who searched for ALS to find information and procedures on how to treat someone with this decease. He found nothing. I cannot tell you how this infuriates me on every possible level!
Uneducated or misinformed is a common problem with ALS across the board. It was just that much more difficult to swallow coming from a group of medical professionals. My team and so many others in the ALS community are willing to teach anyone and everyone about this disease. So, Manatee County, how do we make this happen?
I will always show grace and patience (or at least to really try to) to those who are simply do not know what ALS is but for the paramedic who said “so here is a trivia question, what a great baseball player died from Lou Gehrig’s disease” while I was strapped to a stretcher as my family looked on… I look forward to your helping us educate your coworkers in the very near future.
Posted by: Team ALSF
Date: April 24, 2014
As this tenacious disease continues to attack my body I am forced to rely on others for so much of my day-to-day life. Accepting this was extremely difficult in the beginning but I have learned to not only accept it but embrace it. I now find myself reliant on humans as well as technology throughout the day.
“Take care,” is an overused statement typically said in passing or at the end of an email but it has become a way of life for me. I literally take care; it is how I still live what I consider a very full and happy lifestyle. I am so thankful to have come across some amazing caregivers and have such a strong support system from my friends and family.
However, human relationships can be difficult no matter the circumstances. The relationship between caregiver and patient (I hate that word) is a very delicate one given the amount of help someone with ALS can require. Let’s just say I have gone through caregivers like Murphy Brown went through secretaries. There was the one who looked like Shrek, the one who looked like Tyler Perry (from any of his movies where he is in drag) and the young blonde who treated her hours like she was working retail.
It is important to remember that this person is not only cooking for me, they are feeding me. They are not only helping me get dressed, they are helping me shower. Imagine interviewing someone and 2 hours later having him or her scrubbing your chest with a long handle loofah like an animal at the zoo. Not to mention the awkwardness of scrubbing Mr. you–know–who!
Thankfully, I have 2 wonderful caregivers right now. They help me get the day started, and I know I am not always the easiest person to deal with, especially before I’ve had my morning coffee. But who is, right?
If a caregiver gets my day started its technology that keeps my day moving. I currently use Dragon Dictate, a speech recognition software program that allows me to talk instead of typing. I still have use of my hands and am able to use a mouse and maneuver my way through about the work day. Our foundation currently has one full-time employee, who is paid part-time wages and that is, yours truly. I love my work, my team members, what we’ve accomplished, but more importantly what we’re going to accomplish in the future.
I am at my desk all day with the exception of meals and therapy appointments. I can use my iPhone to adjust the temperature or raise the blinds, on another point for technology. If my hands fail and my voice follows I do have some new piece of mind and his name is Tobii.
Tobii manufactures the hardware and software that enables people with ALS to operate a computer with their eyes. I know this sounds like something out of Star Trek, but I ensure you it is not. It is all a little scary using it now as I don’t necessarily need it but probably like a skydiver is good to have a backup chute just in case.Without technology I would truly be lost right now. It allows me to operate on a level playing field to the rest of the world. It allows me to connect in every sense of the word. Because of this terrible disease I need help every day, and you know what? That’s alright by me!
Posted by: Team ALSF
Date: August 30, 2013
When you’re on the side of a mountain in the middle of a range chock full of them, dusk turns to darkness in an instant. We were on Hour 6 of our 4 hour hike, our large group of 25 people, was now two or three smaller groups, walking the same treacherous trail. I remember having the thought or feeling of relief when the sun started disappearing. I mean, there was no way our tour guide would keep us wandering through the Andes after dark, right?
My chair was part of the lead group, my seatbelt fastened and a bandanna tied tightly around my forehead to keep my neck supported. Then there were the four grown men — two in the front and two in the back — lifting, pushing, and even sometimes pulling my chair up and down the smallest of paths. Leading the way in our group was Kyle, a brave, unbelievably determined individual.
Kyle was not only leading our group, but the entire movement, and he was doing so with an extraordinary amount of responsibility on his back. Literally. He had Steve and Michel’s son, Rivers, strapped to his back in a very well-designed and durable hiking/kid-carrying backpack. Not to mention, he was holding the one flashlight our group had packed for this four-hour day hike. I still, to this day, cannot imagine the amount of pressure he felt with every single step.
I remember all of us, at one time or another, cursing our guide, the terrain, our shoes, and anything else that seemed to be slowing us down. With the cameras following us, we truly felt like we were on Survivor.
Our guide told us that once we got to the Sun Gate, the hike would get much easier and the view would be worth the work. The funny thing about the Sun Gate is that if you arrive after dark, that view is far less impressive. Shocking, I know. And while it was definitely a moral victory at that point in our journey, it would ultimately be a very short-lived celebration. Yes, we could see lights in the distance that were said to be our hotel, but the vision of “Sound of Music,” like rolling grassy hills our guys had promised, were instead more treacherous, twisting trails.
Once we were all used to the dark, there was actually a sense of calm. I imagine an aerial shot of our groups walking along using iPhones as flashlights and yelling out “5 steps down, 8 steps up” like we were some type of tactical force would have been quite impressive. Hell, it was impressive, I was there.
We reached a relatively flat stretch, and by “flat,” I mean no sudden inclines or declines, that was far too rocky to ride in the chair because of the constant jarring of my head and neck. I was like a human bobblehead. So I decided to walk. My feet felt foreign and my legs felt like Jell-O, but it was easier — or at least less painful — than sitting in that damn chair.
The two men who were responsible for lifting my chair (and my life) were now holding my arms as I threw one foot in front of the other. I will forever be in debt to those two guys. One, a salt-and-peppered New York City executive built like a yoga instructor, and the other, Steve’s caregiver who could easily fill the role of Thor, literally carried me up and down Machu Picchu for 11 hours.
I know I have ALS. And I know that this vicious disease tries to break my body every day. So to try and explain or articulate the way it felt to walk across the last mile marker, then fall into the arms of a loved one, and have a beer with a group like Team Gleason moments later…is beyond words. Beyond expectations. And beyond any feeling I can ever imagine having felt. It was, genuinely, a life-changing experience.
See the original post, and read more from Kevin on his blog at The Huffington Post.