Greetings everyone, no the ALS did not spread to my hands yet, they just thawed out long enough to finally write an update. And like that’s going to stop me from writing, anyway. Hope you all enjoyed the holidays!
Chapter 1 – BARN DANCE!!!
I want to obviously start off by thanking everyone and their Mother (mostly metaphorically speaking but in some cases literally speaking) for the incredible Barn Dance Fundraiser that was put on for me in December. What a great event idea by our neighborhood friend, Timmy Long. I tried to stay out of all planning/auction/raffle items, etc (it’s so uncomfortable), but from what I was hearing, I had high expectations for the event. To say my expectations were exceeded is like saying Biebs and Li-Lo are a jailhouse Tinder match. Bie-Lo? Li-Bi? Someone hook those two jailbird lovers up already.
I think the three things that stood out for me most were 1) So you're telling me I just have to go drink with 300+ of my best friends/family and some huge amount will be raised for my medical trust? We should all be so lucky. 2) The INCREDIBLE and ENORMOUS amount of items that were donated for auctions/raffles/dinners, etc. I think we had a bid for every possible item/service this side of the Mississippi (why do people say that), save for a trip to Dr. Kevorkian’s lab (and good thing because I may have bid on that for a few of you). 3) I hardly noticed the section called “Eric’s Encouragement Corner” while I was there. I was basically just trying to ‘Survive and Advance’ the night (more to come on S&A in a bit). Well, I had literal tears in my eyes when I started looking through the pics and saw all of your funny, inspiring, compassionate and personal notes on the dry-erase boards for me to read. Seriously, imagine you’re going through what I’m going through and you see all of your silly dumb faces, smiling, hilariously posing and holding up your sign. It just makes you like life a little bit more.
A special thanks to everyone who donated so incredibly much, particularly my guy Joe Atamian out in Cali that donated $20K+ worth of concert/VIP packages and Meet & Greets with many awesome bands. Also, very special thanks for the incredible amount of pizza donated by an owner and company near and dear to our family….. Old Town Pizza in Schaumburg http://www.oldtownpizzaco.com/menus/schaumburg/. Owner Todd Suma has been a family friend of ours for decades, and he routinely sacrifices his bottom dollar to give to those in need (they are a constant sponsor/provider for our Church carnival fundraiser that my parents assist in every year). I also used to deliver pizzas for Todd as a strapping young lad in high school/college. I remember unsuccessfully begging all the older employees to buy me booze when I was underage. I was so pissed. They have morals, amazing food and could not be better people. The only problem is that Todd is a Cheesehead Packers fan. Hey, at least he still has teeth (zing!). PLEASE go order from them; I still get a slice of their pizza every time I’m back home. They really hooked us up. As a professor once told me…. “Good shit.”
Another funny story pertains to the “pleasure pack” basket that was donated to one of the neighborhood Mom’s (big props to the neighborhood Moms for securing this fun-filled basket! Some of them are even grandmas). Yes, it was certainly a “pleasure” pack of items. Well my buddy Dan Schuman decides to secretly bid for this basket ‘on behalf’ of our other buddy Jeff Jesernik (I’ve known Jeff since first grade…. He’s tried fighting me for years, still has never won…. I even pulled his jacket over him and beat him up over a girl in 5th grade…. And we won’t even mention the bb gun story. Oops. Ok, I can’t even lie about 5th grade…. He actually beat the hell out of me. But that was the only time). All of sudden, Jeff’s name is called as the auction winner and he has to fork over the money for the pleasure pack basket. Schuman ended up taking it home, though his wife Julie could only roll her eyes at him as I could talk better than Schuman by the end of the night....dot dot dot. These are the type of stories that made growing up with all those scumbags so much fun!
Chapter 2 – Ryan Stefan “Fight Like a Champion” Video
A special shout out to my high school boy Ryan Stefan for his filming and editing of my “Fight Like a Champion” football game fundraiser back in October. Ryan is an aspiring film graduate at the University of Oregon and he did a phenomenal job on this video and providing support to me these past 7 months. For those who haven’t seen it….. http://vimeo.com/m/81141223.
Chapter 3 – Disease Progress / Clinical Trial / Treatment Updates
The disease progression has continued at its same steady, but comparatively slow rate (albeit not nearly slow enough for my liking). Holidays were real rough with so much going on, then I had a great two weeks and then a brutal couple of weeks and now I’m coming off the best week symptom-wise in months. Up and Down, so life goes for all of us. If you would have told me a year ago how blessed I would feel to have a comparatively slow progressing version of ALS…. Well, I would have laughed in your face and pushed you, Elaine-from-Seinfeld-style. Loud restaurants and bars are a no-go as I just can’t speak well or loud enough to be heard… and when I can, the effort it causes me is so great that it’s just not worth the exhaustion. Anytime there’s a dispute or argumentative-like discussion [like trying to return my cowboy boots after wearing them only once at the barn dance :) ], the words just don’t come out and I have panic attack-like symptoms and just leave the store. As hard as it is, especially for such a proud and independent person, I am learning to adapt and ask for help so I don’t find myself in those anxiety-laced situations.
We did get some devastating news a few weeks back. Our clinical trial doctor in Grand Rapids is leaving to take a new job in a different state. We had become extremely close to her, with the frequent nature of our clinical trial visits. She is an incredible person and doctor; we are hopeful to continue our relationship with her. We will be continuing the clinical trial as we reassess a new game plan. We’ll try to hit this curve ball as far as Jesernik hit Frey’s curveball 10 years ago. I think that ball is still orbiting earth. The clinical trial team of Lynn, Stacy and Heidi are some of the coolest, most bad-ass people you will ever meet. You really get to know people sitting there for 5-6 hours per day, every other week. When’s the last time you spent THAT much time with even your close friends? We never want to leave our clinical trial visits. Big thanks to my immediate family for continuously driving me to and from the clinical trials, allowing me to work/sleep on the road. I will never question my Mom’s driving abilities again after driving through two horrible white-out snow storms! I still have no idea how she did it (partly because I was sleeping hahahaha). You’re the best Mom!
And we of course are still getting our excellent multi-disciplinary clinical care from Northwestern’s esteemed ALS staff, led by Dr. Sufit and his lead nurse Ginnie. They are top of the line. We continue to participate in Northwestern’s ALS Young Professionals Group every month. With Susan and Megan running the show, we have so much fun with the whole group and they always lift my spirits. I’m telling you, everyone who is active in the ALS world, chooses to be…. They are the nicest and most compassionate people out there.
We have also utilized Northwestern’s top notch faculty list to secure an incredible psychologist for Lindsay and I to see weekly. Her name is Dr. Zuskar (Dr. Z for short), and she is one of the smartest, nicest and most uplifting people you will ever meet (and also sprinkles in some of my favorite sarcastic humor! She would fit right into our family). Lindsay and I walk out of there forgetting we had a “psychology” appointment…. It’s more like talking through your thoughts with a close confidant. We have so much fun with her and have learned tons about coping, sleeping, meditating, breathing and generally just becoming happier, more fulfilled human beings. I’m glad to see a recent societal shift towards the acceptance of those who seek psychological and psychiatric treatment. I should have been doing this years ago, who doesn’t like professional confirmation that the thoughts you have of smacking the 20-question-asking bozo sitting next to you at a Continuing Education Licensing seminar are normal, human thoughts! Dr. Z is the best and we are so happy to consider her part of our ‘family.’
There have also been some good results overseas in two trials that we have been closely following (especially my brother Josh, he knows more about these trials than most of the doctors we’ve visited): Neuraltus’ NP001 trial and the Brainstorm’s NurOwn ‘stem cell’ trial in Israel (Here is Brainstorm’s latest press Release….FULL DISCLOSURE: My immediate family is all now shareholders in this current ‘penny’ stock! http://www.brainstorm-cell.com/index.php/news-a-events/287-february-4-2014). We are hopeful both trials will be available in the United States within the next year, as there are already confirmed US host sites once the standard trial minutia gets sorted out with the FDA. We continue to pursue any and every possible treatment available that has even the slightest likelihood of slowing down progression. We have a big pile of “Why not?” supplements, creams, oils, etc and I am taking all of them. And a lot of it we are paying for with the fundraising money you all have graciously given.
Chapter 4 – Fight Like a Champion Medical Trust
The vibe I get from everyone is they don’t really give a rat’s ass where the fundraising money is going. But, as a family that has put on several fundraisers already, I feel it is important to update you all on how vital these proceeds have been and what the hell we are doing with them. With all the money we’ve raised in our “Fight Like a Champion” medical trust, we have been able to literally pursue any and every treatment and symptom-relief medication out there. We have also been able to use that money to fly around the country and get various ALS expert opinions and perspectives (and also get on their minds now for when future clinical trials commence at their locations). The best text-to-speak software has also been purchased from your funds. As for costly overseas ‘black-market’ treatments, we are currently in a holding pattern building our nest egg, waiting to pounce when we believe the cost/risk/side effects are worth the potential reward for some of these experimental treatments/surgeries that have not been approved by the FDA. There’s no right answer on when to do so, but we believe the time is nearing to be aggressive, as the disease is progressing at a rate too fast for all of our likings. There are just not enough words to thank you all, and I’m sure you’re sick of hearing me say it so I won’t go on and on…. but THANKS. To clear up one misconception, “Fight Like A Champion” is a medical trust that was established by my family as “Grantors,” but it is not labeled as a 501(C) tax-exempt “non-profit organization,” and thus you cannot write off donations on your income tax statement. If we were to do that, then we could not direct those funds to any one individual (cough…. Me). Those that donate simply to “Eric Von Schaumburg” with “Medical Expenses” put in the memo are deposited by my parents into a separate Chase Account called “Eric Von Schaumburg’s Medical Fund” from which we draw money for ALS-related items that cannot lawfully be bought by a medical “Special Needs Trust.” For the time being, we just want to build a nest egg as large as possible as we monitor how incredibly costly these non-FDA approved treatments are.
Chapter 5 – Quality of Life
Obviously, the two most pressing questions on my mind at every single moment are 1) How long am I going to live and 2) What’s my quality of life going to be like? You try not to think about it, but how can you not? I’m at a stage in my life where very large, complex and undesirable decisions need to be made in a short period of time and, as a detailed planner my entire life, I sure would like to know how long I’ll be hanging around. Unfortunately, that question is too variable to answer right now. But as for “Quality of Life,” Dr. Gelinas in Grand Rapids shared with me some very telling results she’s received surveying hundreds of ALS patients from disease onset until death. She’s found there is very little fluctuation in her “quality of life” surveys from when you first notice symptoms to your ultimate diagnosis and right up until death. This completely shocked me at first, but not after I started thinking about it. Those who perceived themselves to have a high quality of life at disease onset, adapted throughout and continued to feel that way all the way until death. And same with the opposite for those who believe they have a low quality of life. “Quality of Life” is merely a perception of our adaptability to life’s challenges and whether that adaptability allows us to continue to pursue happiness. Perception is reality. As someone who loves every ticking second of my life, the light turned on. I will always have a high quality of life.
I was also able to catch up with my close childhood and college friend Mike “Goose” Victor. Anyone who knows Goose knows how intellectual and introspective he is. Any time you need answers or wish to ponder a deeper, more sophisticated meaning to life, he is your guy. Combine that with an awesome and outgoing personality and the way he’s been there for his friends his entire life; it’s no wonder Goose is a successful attorney in the Chicagoland area. He reminded me of something I felt very foolish for not remembering: In 2006, Roger Ebert lost his ability to speak, yet his voice became even more powerful through his writings and advocacy for a number of important causes that made him much more than a beloved film critic. Talk about quality of life. Since I know my updates are very short, concise and to the point, here’s his journal should you want to read more. He is an inspiration. http://www.rogerebert.com/rogers-journal
Chapter 6 - PEBBLE BEACH, BITCH!
For as long as I can remember, my Dad and my #1 bucket list item was to play Pebble Beach together. I had looked into it for him, but it was just so damn expensive that I continued to push it back, even as his black hairs turned to gray, his ‘tennis’ elbow got worse (he doesn’t even play tennis) and the gout continued to plague his feet (he’s going to smack me when he reads this). Then, I open this magical Christmas envelope from my incredible girlfriend Lindsay, and thank god there were no cameras there. I definitely shed some tears reading that she had booked a trip to Pebble Beach for my parents, her and me in early June. My pops and I are playing SpyGlass & Pebble Beach and we are staying in the uber expensive resort for the weekend. Always marry a cute, smart girl with a successful career :) I will definitely be hitting many ‘a balls into the Pacific; looking for Marine Biologist George Costanza to be riding that beluga whale beast. If you don’t get these Seinfeld References, you need to get out more. Or in more.
CHAPTER 7 – SYNTHETIC VOICE – GOD I SOUND SEXY
We have recently purchased an iPad mini, equipped with text-to-talk apps. I’m like a kid in a candy store playing with my new toy (sounds like a Yogi Berra quote). I got this British dude talking as me…. faster, slower, higher pitch, lower tone…. Mixing it up quite a bit depending on my mood. I know Lindsay is happy with his accent ;) And the best part, I have a little alarm that ‘dings’ so people know to shut the $&%# up because I want to talk! You guys just have no idea how annoying I’m going to be with this thing.
I have also been voice banking which (if you didn’t see the 1,000 emails and facebook messages we sent you) just means I record various words/phrases while I still have a semblance of a voice to play back once God graces you all with the gift of completely muting me. The feedback we got from you guys was awesome and so hilarious! I recorded everything you sent, from “Bears suck” to whole verses of “Usher” songs (appreciate that) to “A ground ball past Jenks up the middle of the infield, Uribe has it. He throws…. Out! Out! A White Sox winner and a World Championship! The White sox have won the World Championship, and they’re mobbing each other on the field” (that John Rooney radio call never gets old) to about 74,000 phrases that I cannot even begin to print in such a public forum. You guys are the best and it makes that process so much easier. Keep ‘em coming. I’m not above charging $5 medical donations to get me to say anything you want about your girlfriend, husband, mother-in-law. And I’ll end them all with this ridiculous laugh that parallels the Dumb and Dumber scene for the “most annoying sound in the world.”
My brother has also undertaken a costly and time consuming project of creating a synthetic voice for me to use. We all sat around twiddling our thumbs determining how to proceed because my voice was not strong enough to undertake 60 hours of clear, concise recording that it takes to create a synthetic voice that will speak any word for you in the future with your own ‘new’ voice, not just the phrases you’ve recorded. All of sudden, my sister Sara nonchalantly blurts out “Hey, Josh’s voice is similar to Eric’s, why doesn’t he just do it?” It was so obvious and so Sara. Sara has this unconventional way of thinking. It meshes perfectly with my rigid, inside-the-box, pragmatic thinking; she’s always able to have me look at things from this other perspective that afterwards, I often think… God I am silly for not seeing it that way from the beginning. We’re perfect for each other. Anyways, they will be able to change the tone and pitch of his synthetic voice from my samples, to make it sound more like my voice than his. So, I won’t be forced to talk like that loser brother of mine for the rest of my life. Just kidding Josh, thanks for doing this! Then, I’ll be able to upload that voice to the best communicative hardware device we can find and ultimately annoy you all again with a voice that is basically mine. Again, all due to your fundraising money. This stuff costs tens of thousands of dollars and is not covered by insurance.
CHAPTER 8 – MEDICAL CANNABIS – MY TICKET TO FRIENDS FOR LIFE
Yes, yes, yes…. Everyone stop asking. Yes, I’ll be eligible for a medical cannabis card once Illinois legislators put their brains together (oxymoron) to define all the rules and regulations for the law that went into effect on 1/1/2014. Geez, I had no idea I had so many friends. I bet I have a group of 10 hardcore stoners with me until I take my last breath…. Some of them may even help me take my last breath. On a more serious note, it is amazing what the medical cannabis industry is coming up with. I had no idea of the various strains and components of cannabis until I was diagnosed and Josh and I (mostly Josh) started doing some research with this new law coming into effect. Within the cannabis plant, there are a number of active ingredients. The cannabinoid THC is the most widely known and gives off the psychoactive effect of being ‘high.’ The Cannabinoid CBD (cannabidiol) is another active ingredient (that gives off no ‘high’) and one with far greater medical uses for treating a variety of ailments http://www.leafly.com/news/lifestyle/whats-the-deal-with-these-high-cbd-strains. Basically, you are not running to your street corner buying “dime” bags of high CBD, low THC cannabis strains from some funny looking guy named “Too-Tough Tony.” He’s selling you all high THC strains (the recreational-using buyer hopes, at least) and cares less about the CBD content. But, by organizing and regulating the cannabis industry, people are able to grow infinite strains of cannabis with varying amounts of CBD/THC levels, and even extract it into oil and other forms (and oh, by the way, also help with the national debt and lessen drug cartels infiltrating our children and our banking system). THC does also have some medical uses but more limited and not enough to typically outweigh the potential bad side effects that the psychoactive high may present in using it to treat an actual symptom while maintaining functionality throughout the day (in my unscientific opinion). Most ALS patients with medical cannabis prescription cards (including myself should I choose to pursue that avenue) would use medical cannabis to, in part, control the constant fasciculations (muscle twitching) that continuously aggravate the beejesus out of me (they feel like bugs are just constantly biting my body, it can be a torture-type feeling). You know I’m going to have a bad day overall if the fascinations are bad and high CBD strains of cannabis alleviates this symptom better than any prescription drug or compound cream that I’ve found so far. CBD can also act as a natural anxiety reliever that some compare to Xanax or other anxiety relieving prescriptions (of course this statement is anecdotal and not confirmed by the FDA)
So if I can help control those symptoms with strains of high CBD/low THC cannabis (I don’t want the ‘high’ of too much THC, it gives me anxiety, paranoia and makes me think bad thoughts about my future), I’m going to use it to control that. Who wouldn’t? I just wish a few bad apples didn’t ruin the country’s predisposed outlook that cannabis is some horrible act of evil with absolutely no benefits and people who use it should be looked down upon by the corporate world and society in general (if you’re interested, do some research; cannabis has infinite number of other uses – like making clothes and producing oils). My research has made me pause, think about it, and ultimately move away from simply stating “Yes, I agree that we should not legalize medical cannabis because then a bunch of potheads might abuse it and get ‘high’ with their 19 year old ‘bro’s,’ eating Cherry Garcia ice cream and watching Tom and Jerry while they stare at their hands giggling for hours.” In all seriousness, how is that any different from alcohol or pain killer addictions, which are FAR more addictive, dangerous and accessible than high CBD strains of cannabis? In fact, I would argue that 21 year olds pounding liquor the way many of us did at that age, and some still do (and then some even getting behind the wheel) is an infinite greater offense than smoking cannabis in your house with two friends relaxing and watching Bob Dylan’s 1964 Newport Folk Festival DVD. The medical cannabis industry is also conscience of the carcinogens inhaled when smoking it and is steadfastly against that form of cannabis intake. There are vaporizers you can buy that simply heats up the cannabis to a vapor, which releases the CBD/THC and other active ingredients. This eliminates the toxic carcinogens produced by smoke. This is so vital to people with ALS, as respiratory failure is the ultimate cause of death. There are also food edibles (with CBD/THC extract included), tinctures and other forms as well. There are still many regulations to be agreed to (including what I believe the most important one – figuring out the least-invasive and most cost-effective THC blood-level test that rivals alcohol’s BAC Breathalyzer to ensure drivers are not impaired). All I’m saying is review the evidence; don’t be closed minded and you may form a different opinion that you initially had regarding medical cannabis, like I have. And, no, I won’t ‘smoke you up’ buying high THC strains if I end up getting a prescription card, probably, unless you invite me to a Bears Super Bowl game or something really awesome like that. There’s a price for everything, right? Relax, Republicans, I’m only kidding. Oh damn, he went political and lost half of his audience. For the record, I love Chris Christie and was in favor of closing as many bridges as necessary to make New Yorkers listen to radio bozos talk “New York Tough” while stuck in traffic for an extra half an hour (I’m going to hear it from all my East Coast relatives).
For more thoughts on controversial, nation-dividing subjects, check out Chapter 8 in my previous novel titled “How ignorant must one be to oppose same-sex marriage.” Seriously. Is this 1940 still? Get with the times, people. Why must I still be embarrassed to be a white, Christian, heterosexual man? Quit making us all look bad with your prejudice viewpoints based solely on race, religion, sexual orientation and gender. I understand, enjoy and even tell a funny (ohhh that’s bad!) joke in jest better than anyone (keep the red-headed jokes coming my way), but I am still amazed at how close-minded people can be in not even giving a living, breathing human being a chance to show you who they are. It’s called equality . I digress.
CHAPTER 9 – ONE MOMENT OF WEAKNESS; ONE MILLION MOMENTS OF..... BITING
Two minutes, twenty-seven and one half seconds. That’s it. That’s all it takes of letting your guard down to find yourself on midnight potty runs with your furry new four-legged friend. The little, cute (I’ll admit it) puppy that was to be auctioned at the barn dance fundraiser has a new family with Lindsay and I, thanks to our awesome relatives the Musto’s. I couldn’t help but notice (and encourage) her affection for licking and smelling my “Stella” beer all night of the Barn Dance. As some of you know, we waffled with her name (Lindsay? Waffle? What?) and called her “It” for the first few days. So, we take her down by the Chicago ‘EL’ train tracks for a potty run. Of course, she won’t go. I’m cold. I’m annoyed. Football is on. No animal is that cute. Then, the train comes whistling by and our poor little “It” literally has the crap scared from her! It was so funny once we knew she was ok. Combine her love for “Stella” beer with the Chicago’ EL’ Potty Train….. We named her Ella.
And really, what the hell was I thinking? Do you know how many girls stop us now to talk about our cute little pup? Why would I not get a puppy 10 years ago? You don’t even have to pay for a dinner date. Now, with my symptoms, I just try to avoid talking to anyone and everyone as I take her out to Grant Park, wearing my fake, unplugged headphones that only appear to be pumping beats into my ears, while I pretend to not hear all the high-pitched (is it wrong to say annoying?) girls ooohhhing and ahhhing about Ella…. “What? Huh? Sorry, what? (pointing to my ‘headphones’).” Then I run as fast as I can back up to Lindsay. Funny how life works.
CHAPTER 10 – MESIROW FINANCIAL’S FIGHT LIKE A CHAMPION MONTH
This crazy, month-long February fundraiser at Mesirow Financial is still going on, and I really had no idea ALL OF THIS was going to happen, so I won’t give a full comment on it yet. But, oh my lord, the people I work with are so flippin’ awesome. As one part of the fundraiser, Mesirow’s esteemed and 2-time award winning “Cookie Drive Staff” ended up selling 6 THOUSAND cookies, with all proceeds benefitting my medical trust. Yes, 6 THOUSAND. In two weeks. At $1 - $5 per cookie. Then, they had to stay very late at night, sort through all 6,000 cookies and hand deliver them to 1,200 employees’ desks. It was incredible; I still get choked up thinking about it. They have my back for everything and anything and have helped me so much throughout my often crazy work schedule and sleep/mood patterns (I can get very ornery). My department team of Maureen, Casey, Dan, Lynn, Katheryn, Neil, Susan, Liz, Melissa, Catherine, Lisa, Irene, Connie, Pete, Johanne, Tom (who came in from Colorado for my Barn Dance) and my sports-talking-pal Paul have been so incredible in supporting and assisting me through my day-to-day work challenges. A few of our department members even bought and donated costly raffle prizes for Mesirow employees to win if they bought cookies or donated to my cause. Everyone else at Mesirow has been absolutely amazing as well, with Maureen taking the lead and assigning floor leaders to serve as ‘cookie donation collectors.’ A special thanks to our whole ‘Emerging Professionals’ group and everyone that collected, sorted and delivered so many cookies on my behalf (you know who you are). We also had a great happy hour fundraiser that Mesirow’s Katie Seeman and Ben Diedrich set up, with help from so many more. When I think about the one constant in my life from when I grew from a questionable work-ethic frat boy punk interested in weekend partying to a career-driven, work-every-weekend man, it was my time at Mesirow Financial. I will be eternally grateful for their amazing support during this challenging time.
CHAPTER 11 – SLEEP LOTS AND GAIN WEIGHT
The dream title for many of you deadbeats out there. I’ve been told to sleep 10 hours per night and get to a BMI of 31 (which correlates to about 215 pounds…. I’ve gained 15 pounds and I’m still only 190), while still being told that low-energy stretching and exercise is vital. Do you know how hard it is to sleep for 10 hours daily and just let your body go, after spending 30 years being obsessed with a cut, athletic body and having fantasies of cooking raw eggs directly on my formerly chiseled, rock-hard abs? I feel like a guinea pig in the next big Michael Moore documentary.
Chapter 12 – What can YOU do for ME?
Everyone always asks me constantly….texts, emails, Facebook, Twitter, LinkedIn, phone calls, voicemails, in person….. “What can I do for you? Let me know, I’ll do anything.” While I greatly appreciate it, asking for help is about as appealing to me as mashed peas served over fried, lye-soaked lutefisk. I assume there will be some google searches now for this delicacy (which wasn’t so bad actually). Anyways, so I’ve finally figured out what I need you all to do for me. Just spread the darn word about ALS. To anyone. To everyone. Try to tell 3 people each week that your friends with this 30 year old life-loving ‘kid’ who (after 7 long years of working his ass off) finally launched his dream career in sales, got promoted to ‘Vice President’ as a full-time producer and got to enjoy it for a mere 2 months and 19 days before being diagnosed. This kid who finally met the girl of his dreams 2 years ago and now will most likely be deprived of so many wishes and desires he had to coach his son’s sports teams, attend Daddy and Daughter dates, send them off to college, spoil his wonderful grandkids. All because the ALS “Claw Machine” reached down from the sky and randomly picked my stupid face to infect with this disease.
Seriously, I so appreciate all of the donations, but I could care less if I get one more dollar or attendee at a fundraiser. I would infinitely prefer you mentioning ALS – its sporadic nature and 2-5 year life expectancy with complete paralysis slowly killing you – every time any kind of illness or disease discussion comes up with ANYONE. pALS (People with ALS) are often frustrated because the awareness is so low for this disease. The month after my diagnosis I was still correcting myself from telling people I had “ASL” instead of “ALS.” That’s how little I knew about this disease…. And that’s coming from an avid sports fan with Lou Gehrig on my Mt. Rushmore of greatest baseball players ever. Former NFL player Steve Gleason is leading this awareness campaign and I invite you to check out his incredible life and website http://www.teamgleason.org/. Steve has had a horribly rapid disease progression and has gone from a 34 year old butt-kicking athlete to complete paralysis in 2 short years, for no reason at all. You may have seen the Microsoft Super Bowl advertisement with Steve, highlighting their amazing ‘eye gaze’ communication technology (I tried it out for kicks…. It is pretty damn sweet). Steve is my idol, he’s a lot of people’s idol.
One of the biggest reasons for so little awareness is the horribly short life expectancy once you are diagnosed. ALS actually has a very similar occurrence rate of some of the more well-known neurodegenerative diseases, but because of such a short life span, there are 10+ times fewer people actually ‘living’ with ALS compared to some other diseases. And once your loved one passes away from any disease, while you certainly continue to fight hard for a cure in their honor (and for some people, ALS research and fundraising takes over their entire life even after their loved one has passed), its only human nature for most people to fight 1,000 times harder when your loved one is still alive and you are hoping you can help them find a cure to save their life.
Through more national campaigns and public service announcements, it seems European countries are more advanced in terms of raw public awareness of ALS and its quick, deadly deterioration. One other cool thing going on in Europe is project MinE, which is hoping to genetically sequence every person with ALS in the world https://projectmine.com. We believe this is the most promising long-term solution to finding an actual cure for the disease. In just the last few years, brilliant researchers and physicians have identified 14 separate gene mutations that are consistent with pALS. They are just tipping the iceberg with what this all means, what other genes might be out there and what gene-specific treatments could be used to target them. So this is all thrilling and exciting long-term news. In the U.S., Duke University is also conducting a similar project. We will be making a trip down to Duke March 7th to learn more about their genetic sequencing project and, of course, to check another item off my bucket list (Duke vs. North Carolina at Cameron Indoor Stadium!).
So, yeah, all I need from you is to spread awareness and just tell people about the disease…. In case you forgot already, It’s ASL...errr ALS (Lou Gehrig’s Disease)! That is my best hope for finding a cure in time to experience all of those dreams I have. And if we can’t save me, then I want to watch from the skies as future generations of families are spared from going through this awful journey that my family is now going through. What better reward could I have for all your efforts than sparing some future life-loving person from this disease?
Chapter 13 – SURVIVE AND ADVANCE (S&A)
It seems like such a silly phrase, obviously stolen from the drudges of NCAA Basketball’s March Madness, where the teams favored to win consistently live by this motto, so as not to care about their margin of victory as long as they ‘survive and advance’ to the next round of the tournament. Lindsay and I used to constantly text each other that throughout rough days, tongue-in-cheek. “How were your 10 surgeries today Linds, just remember…. Survive and advance!” We even compressed it down to “S&A.” Just S&A baby. Well, then a funny thing happened…. I got this crazy awful diagnosis and this phrase took on a whole new meaning. I often think about this phrase during my worst days, when the talking is bad, the twitching is annoying and the food chewing resembles the pace of Kate Hudson’s. Just ‘survive and advance’ today and tomorrow will be better. I challenge you to incorporate such a simplistic motto into your daily battles, when life just doesn’t seem fair and you’ve had it up to here with the mundane, seemingly unimportant challenges thrown your way. Just S&A, Baby.