54 DAYS

Hey everyone,

As many of you know I was recently (Jan 21st doesnt feel recent anymore) admitted to Northwestern’s Intensive Care Unit (ICU) with breathing issues due to a failure to clear secretions from my lungs with my many machines.  ICU sucks.  You go in with one problem and often leave with many.  The threat of kidney failure, high blood pressure, pneumonia and a heart that suddenly weakened is a few I endured during my 22 day stay. I’d say 6 or 7 of my 10 worst days in life were experienced here. The antibiotic meds caused my kidney creatinine levels to skyrocket, which in turn caused my blood pressure to soar.  Or was it the other way around?  No team of specialists could tell me but they visited so often that you can thank extended and mostly unnecessary ICU stays like mine for your high premiums and deductibles. RIDIC.  Oh and I just laid there for 22 days, maybe getting up a dozen times to my wheelchair. All your muscles begin to deteriorate (even more so with the progressive nature of ALS).

 

The decision was made for tracheostomy surgery and connection to a ventilator to breath for me.  The other options were to 1. Aggressively clear secretions from home 24/7 until an emergency surgery was necessary (likely real soon and performed by an ER doctor instead of the expert Dr. Bove who performed my surgery) or 2. Death.  That made my choice fairly cut and dry, I'd say. As an education, I now breath from a hole in my neck rather than thru my mouth and nose, which comes with its silver linings.  First, I no longer have to wear a breathing mask, which was becoming 15-20 hours/day the last couple weeks.  I can also now lie flat on my back without gasping for air.  No more mucus in my mouth; it gets cleared out before reaching my trach.  I'm much more kissable.  Also, no air goes thru my nose, which basically means I can’t smell, at least not well.  No more torture pizza and butter popcorn smells, I’m loving it.   Of course, I had perfected my passing gas games, subtly moving from a group at ground zero to down the hall at the first whiff of disaster.  Now my life’s been turned upside down.  Was that one ok? Or was is it a SBD? I’ll never know.

 

After 22 days of hell and feeling legitimately schizophrenic (ask my visitors), I was basically paralyzed from inactivity and it took 4 people to get me from bed to chair.  Day 23 I was finally admitted to the Rehabilitation Institute of Chicago (RIC) so my family could learn how to manage my trach (no small feat) and I could rehab to get my strength back.  I’ve been here now for 31 days and I’m finally going home today.  I’ve made tremendous strides to regain a lot of what I lost cooped up in ICU.  It is really an exceptional place.  I am down to 1 finger typing now so this took me longer to write than it took Shep to graduate.  I’ve also learned how to live without internet….fuck, its brutal!

 

It wouldn't be a blog without at least one inappropriate story, and there is few to choose from.  I think my favorite one is when I had to get a urinary catheterization.  I had not known this bundle of joy existed prior to my stay.  Well the young, innocent  catholic girl nurse (we’ll appropriately call Mary) didn't know what she was getting into.  It had been an already long stay, my wits were jumbled and I was reduced to my primate form.  I got a little bit too, uh, excited and Mary shouted “Oh my!”  Her 2nd attempt was just as futile so she pronounces “I’ll have to get Dave in here.” No worries, right?  Wrong.  Dave was already pronounced “hot” by the women there with his bad boy tattoos.  I’m immediately transformed into George Costanza right before his encounter with the male masseuse pondering questions like “what does it mean if ‘IT’ moves?!”  Am I going to have to reassess my wants and needs? As soon as Dave got anywhere near my little 'E' with that devilish spear, I was writhing in pain. Life change averted.

 

That's all I got for now.  Sorry I couldn't reply to anyone that has texted or emailed me.  I was almost finished with my previous blog before I came in here so I’ll be posting that one within the next few weeks.  Special thanks to my awesome family/wife for taking shifts these past 54 days to ensure I was NEVER  alone, day or night - truly incredible. Shep and Williams - you are family, thanks for taking care of me so much.  Thanks for all the visits and good wishes.  Thanks to Mesirow Financial, who continues to stand by me.  In a world of corporate greed, I continue to be humbled by the employees of Mesirow.  Also, some fabulous work was done on a new room for me at my parent’s house.  Uncle “Buck” Tom & Co. (including my bro-in-law Mario), what can I say….you're a crazy mo fo - thank you, the room is awesome!

 

 

CARPE DIEM

 

3RD ANNUAL BARN DANCE FUNDRAISER!! THIS SATURDAY!!

Time for another self-indulging promotion of our 3rd Annual Fundraiser on Saturday September 26, 2015.  Please buy your tickets today! http://www.fightlikeachampion.org/events-fundraisers/

I’ve said before that I have no issues bragging about this event because I don’t set it up and it’s such an awesome night and a really uplifting time for me. The amount and quality of auction items this year is phenomenal!  There will be some great deals.  Also, as I’ll reference below, we are starting some costly treatments so we can use all the medical money we can raise.  Special thanks to my immediate family, the Chicago Von families (especially Uncle Tom, Aunt Georgia and Billy), all my parents’ neighbors, Joe Atamian, Maureen and everyone at MFSS & our partners that are making a HUGE contribution of time, effort and money for this event. Thanks also to the hundreds of family, friends, businesses and people that don’t know who the hell I am that have donated incredible items to the auction/raffles.   In my most silent moments I can’t help but feel this gracious sense of pride that my life was deemed worthy of such events; that the way I’ve lived and the many friendships I have built has put so many people in my corner, rallying.  It’s the greatest present I could be given.

 

Now on to the blog………

 

Man I don’t know if I should be more ashamed that I left our Christmas mischief as the ‘last’ post for this long or that you could have conceived a child and then actually had it since I last checked in.  Please tell me someone actually has.  Spare me the conceived details. What can I say? 30(ish) year olds with ALS and devilish good looks are popular people.  And I’ve been out and about.  Most of you have seen me.  Now where to even start… well we can run thru the basics.  I’m not dead (plus).  I’m not cured (minus). I’m still a smartass (plus).  ALS Sucks (still). And I still firmly believe there’s some milkman out there as my real father (plus/minus). 2015 has had some of the most gratifying and challenging moments in my life.  Why don’t I catch you up…

 

Clinical Trials

We did learn that the first clinical trial at Mercy in Grand Rapids didn’t turn up anything significant.  Well, that’s a qualifying statement with the qualifier that many believe there are hundreds of subset diseases that make up ALS.   So, trials might help 15% of patients with ALS (pALS) but we don’t know why and aren’t advanced enough to correlate some shared gene(s) with those 15%.  The future is genosequencing everyone immediately and then finding connected mutations and learning what treatments that subset respond to.   Anywho, it didn’t help me. But 26 trips to Grand Rapids and back didn’t come without its share of joy.  We met and fell in love with Dr. Gelinas (who currently serves on our personal advisory board), Dr. Baer (The dudes’ dude) and the hilarious staff of Lynn, Stacey and Heidi (that’s what she said).  I miss them all.

 

The 2nd clinical trial I got into was the much-hyped Brainstorm’s “NurOwn” stem cell procedure at UMass with the esteemed Dr. Brown.  I was REALLY hopeful on this one after seemingly encouraging results in Israel.  Unfortunately, I felt no benefit anywhere in the months after injection.  There was a 25% chance I got placebo.  We’ve also heard anecdotally that people weren’t rushing back to the trial with any significant improvements.  Most doctors believe that any successful stem cell treatment must include multiple injections and at higher dosages.  They are testing that out soon in Israel.  Unfortunately, the FDA (and other countries’ equivalents) move too damn cautiously for my liking, forcing companies to do long, drawn out trials at each step.  I get it.  I get the Macro perspective.  Why approve something without overwhelming evidence of statistically significant efficacy, costing insurance companies billions that is passed on to customers premiums.  More importantly, why lead patients to a treatment that may not help them at the opportunity risk of trying something more promising.  The grounds for approval are under a microscope when you’re talking about the whole expensive and extensive surgical process of special IP stem cells, along with the general risks involved.  That doesn’t make it any easier on us ‘micro’ individual patients who are dying.

I am now pretty much excluded from any trials since my ‘2 years from first symptom’ has passed and my breathing scores are right up there with the 91 year old Jimmy Carter’s.

 

Current Health Status

I can’t lie; things have progressed much more rapidly this year than last. I really don’t get it. I had a seemingly slow progression the first year and I was told your progression doesn’t change much.  For you math folk, my progression slope (the derivative) should be linear, like a simple HS calculus equation of f(x) = x ² or f(x) = x³. But that’s not the case.  While I don’t have an exact equation to reproduce my bumpy slow then rapid decline slope, I would bet it is in between the 2nd and 3rd standard deviations of a normal bell curve.  Since we all remember the 68-95-99.7 rule from Statistics class, that means my progression ‘dot’ is such an outlier that at least 95% of all progressions have been more normal than mine.  There.  Math. I miss it.  But to put my progression further into perspective, the ALS-FRS (Functional Rating Scale) is one way you track your disease progression.  It’s a 48 point scale based on your answers to 12 questions.  I was told you have a rather linear progression on the FRS.  Well from 1st symptom (March 2012) to September 2014 (1.5 years), I only lost 5 points.  I scored a 43 in Sept 2014.  But from then to now, my scored dropped from 43 to 17.  Crazy.

In December was when I first noticed some weakening of the fingers.  It was so odd, just my left hand wasn’t as strong.  We had been told that for some cases, the ALS disease can stay contained within your bulbar area (speech, swallowing, etc) for years and years.  So this was quite a disappointment to us.  Once February hit, it quickly spread thru, making my left index finger stay bent at a 90 degree angle and rendering my left thumb basically useless.  It has also spread to my right hand, affecting my thumb and index finger the most so far.  My typing has also slowed down.  Here’s me trying to straighten and spread my hands as far as they will go.  In other news, my hands just signed on to play the Snow White’s evil stepmother’s hands in the upcoming Broadway play (bros, relaxI don’t know these fairytales off the top of my head. It took a lot of google searching to find out the fairytale that included those gross hands and the apple.  I got that image in my head, wanted to include it…. Thought it was Little Red Riding Hood – read that whole plot.  Then thought Cinderella – read that whole plot.  Finally googled “Poisoned Apple” and Snow White came up.  Then had to read that damn plot before finding where this lady with the weird hands fit in.  Ahhh it was the evil Queen in disguise!).

 In March, it was taking me forever to eat all the calories I needed so we elected to have a feeding tube surgery.  It’s essentially just a tube that hangs out my stomach to pump food into me.  I know, real sexy.  Safe to say, my hot beach body days are over.  It’s kind of a bad-ass battle scar though.  And my beer chugging days aren’t over just yet! The feeding tube was to supplement calories so I didn’t need to eat and drink that much.  Sure, my ability to eat and swallow had gotten worse, but I was still mauling down Chicago Cut filets like cows were going extinct.  That all changed on the morning of April 11th.  I tried swallowing a large anti-inflammatory pill and it got stuck in my throat.  Then the contents all came out on my throat and just burned like hell for a few days.  I kept waiting for it to clear so I could resume eating.  It never did.  One of our pulmonologists blamed it on normal progression.  That was nonsensical to me. I was eating steaks and drinking one night, then an acute trauma happened the next morning followed by not being able to eat basically anything.  I swore it would heal up and I would be back to normal.  It never did and I was now resigned to a life of tube feeding with food tastes here and there. Though the food tastes are getting harder and harder these days.

But, the biggest concern I now have is my breathing.  Your breathing is always on your mind as an ALS patient but it was on the backburner of issues I was dealing with.  That all changed during a 6 week period of stress with our wedding coming up, followed by a 2 week Euro honeymoon I packed with sight-seeing tour after sight-seeing tour.  Neither Linds or I could have guessed the nightmare we lived thru as my breathing couldn’t keep up with the hours of walking these tours required, in record heat, unfortunately.  We also had a big issue getting food for me after being told Ensure bottles were really common in the cities we traveled.  NO THEY WEREN’T!!  Ha, so for the next young, Europe honeymooner with bulbar onset ALS (at odds of 400 million to 1)…. Don’t say I never warned you!!  So the combination of under-nutrition, eating too much at once and not realizing what effect all these tours and traveling in general would have on my breathing made for quite a challenge.  Of course once we got back I figured I would stabilize and recover some of what I had lost.  Unfortunately, my breathing has done a further nose dive since then.  We recently purchased a push wheel chair so I can conserve my energy to and fro (yes fro) my destination.  If I try to walk more than a short distance, I’m so out of breath that my body has a meltdown and the body twitching attacks me immediately and aggressively.  Seriously, it’s horrible. I can’t believe how fast my breathing has declined in even the past month… I’m in the stage of mentally processing and adjusting to this newest reality.  This disease seems like just another game….except the rules keep changing.

UPDATE: I wrote that last week.  Now I can’t get around walking anywhere outside the house without a wheelchair.  We just received a mobile ventilation system I can use as needed, so that should help me.  I just don’t get this disease.  I know I joked a benefit of ALS was I wouldn’t be around to watch the Cubs win the World Series but I wasn’t thinking THIS WAS THE YEAR!! : )

 

Current/Future Treatment Status

We will be starting a new treatment this week called WF-10.  It is a Sodium Chlorite based drug from Thailand.  Another similar Sodium Chlorite treatment, NP001, is continuing through the US Clinical trial phases and just got a $1.5M grant from the ALS Association to help fund Phase 2 Clinical Trial thru (in part) Bob Miller in SF.  We have been eyeing this treatment from the beginning, but once I got into the free clinical trials we decided to shelf this high cost treatment.  The time to act is now though.  I recently had a minor port surgery so we don’t have to start an IV every time we want to do treatment, since we are self-medicating.

We also are considering a costly non-approved stem cell treatment down in Florida.

Celebrate good times….. Come on

Now that I’ve utterly depressed youdon’t let me fool you; I’m still alive and kicking!   Here’s some of my favorite moments from 2015… and there were quite a few of them

-We started off the year with my sister having her baby Natalia and me being the proudest Godfather!  She is such a good little baby, never seems to cry, is just happy to be alive.  She loved my keyboard.  But, before we gave her a non-functional one, we decided to hear her out on mine. Her cute little hands banging on the keyboard produced this: 5420 (which is her Mom’s first 4 cell phone numbers), vacaaaaaaaaaaaaa, and then she tabbed over to some unknown screen that only had a little dress emoji.  Weirdest thing.  How did she find a screen that had literally nothing else on it but a cute little girl dress?  I’ve NEVER even see that screen.   So we surmised she was trying to call my sister to tell her to take a damn vacaaaaaaa from work and pick up a dress for her.  Her intentions were quite obvious.

-In March we celebrated Lindsay’s birthday month with a trip out to Arizona to visit her awesome grandparents.  It might as well been my birthday month too.  We took a trip up to Sedona and the Red Rocks followed by a journey up/down to the Grand Canyon.  But my fun was just beginning.  As most of you know, I got a dream day with my favorite team, the White Sox.  Yeah I got to throw out the first pitch, hang with Robin and Bo Jackson, and meet basically the whole organization.  But my favorite part was just hanging in the training room as players came in and we were introduced.  They made me feel like ‘one of the guys’ joking around and then spending some time with me.  Chris Sale was so awesome to us.  An in depth 10-12 min convo with Linds and I felt like 10-12 hours.  I showed Sale what I wrote to Lindsay when I saw him.  Even Kenny Williams got a laugh from my note.  Special thanks to my gorgeous wife Linds and to assistant Sox trainer Brian Ball for setting this up for me.  And to Sox PR Sheena Quinn for showing us around.  It doesn’t get better than that day [For sports I’m talking, Lindsay, not for overall life moments, which you have #’s 1 to 50 of course :)].

-Everything Linds touched this spring turned to gold.  Next up: Final Four tickets.  Aaaand wouldn't you figure, my team since I was 6 years old, Duke, made it to the Final 4.  Yes I went to U of I, and if they square off I want the Illini to win by the slimmest of margins...but it’s truly a no-lose situation.  I was already a fan of theirs when "The Shot" (college edition) happened.  Yet that IL/AZ game to go to the Final 4 my senior year was the greatest game I ever watched (in a vacuum since they didn’t win it all… Right Mike Victor? That’s why Kirk Gibsons injured, pinch hit, Bottom of the 9th, 2 out HR against Eckersly is better than Fisk’s foul pole HR cuz Dodgers went on to win the World Series lol that argument took up ¼ of college!)

I always digress…..so the Final Four plan is to go home Sunday because Linds had to work Monday and I wasn’t forking out THAT much for a 5th level football stadium seat.  But of course, Duke wins.  Then Wisconsin stuns KY and the same 100 level ticket that would have cost me $2,300 is now going for $500 with KY's quest for perfection over.  I had to stay. This only comes around once in a lifetime. By myself, I met some Dukies near me and cheered them on to the National Championship victory.  I couldn't believe how good my seat was.  

-On a whim, I decided to buy "Home Game 3" off a secondary market site for the Blackhawks Stanley Cup Series when they were still early in the playoffs.  I figured I'd make some money selling them if it wasn't the Hawks clinching game, or they'd be going for A LOT more if I waited and it was the clincher, by chance.  Well you can guess the ending.  I was at "Home Game 3" (Game 6) with my brother Josh when the Hawks won the Cup at home for the first time in 77 years.  It's hard to tell in those pics, but there's 3 cool videos in there to check out.  It was a really special brother bonding moment for us.  This was one of the most sought after tickets in Chicago sports history.

-Then in the 3 months of Eric (think summer of George), I did a little thing called Get Married!!  We had a small but awesome wedding on the ELITE Private Yacht at Navy Pier.  What can I say, I feel very blessed that she allowed me to pay her for her hand in marriage.  In all seriousness, I waited 28 years to meet her and I would have waited another 28 to find her.  Simply put, she is the best.  Here are some pics from our wedding.

- We capped it off with our Europe honeymoon to London, Paris and Barcelona.  Yeah, I mentioned some of the struggles but there will still plenty of awesome moments and things we will never see again!  Unfortunately, we tried going to the Tower of London THREE damn times and were late by under 5 minutes each time.  Here are a few other pics.

- I want to apologize to everyone I owe emails, texts, Facebook reply messages to.  I know you understand, but there’s hundreds of unreplied messages out there and just remember that pre-ALS, this wasn’t me.  It bugs me to death.  Just please text me again if you don’t hear back from me for a while.  I know I am really close to a lot of you that I haven’t gotten back to, especially recently with the breathing issues.  Thanks.

- I just wanted to take a moment to thank those especially close to me for all your sacrifices.  We have a team of Linds, Mom, Dad, Josh, Sara and Mel who literally take care of what I need on a daily basis.  Then the incredible help, support and mentorship from my extended family, friends, co-workers, and neighbors.  Hell, we didn’t have enough room at our wedding to invite my long time growing up neighbors, who are like family to me.   So they threw Lindsay and I a separate shower flooded with gifts… and real nice gifts too!!! It was unreal, but that’s the kind of people they are.

 

My Current Mental Status

Well this title is quite a big, loaded question.  Boy oh boy, what is my current condicion de cognitivo?  Well, I can tell you  it’s not at its best and it’s not at its worst.  What a cop out.  These last 5 months have taken this disease to a whole new level and with that comes even deeper and more convoluted thoughts. Wanting to follow the most prudent daily schedule to fight death for as long as I can is juxtaposed with the reality that, TODAY, will likely be the healthiest day of the rest of my life…. so why I am I wasting it on this ‘routine’?  It’s a never ending mind-fuck.   I googled versions of "how to cope with your own death" and interestingly I found a lot more diverse and impactful rhetoric on coping with a loved one's death.  What the hell? Not much help there.  I googled "What is the meaning of life" and immediately wished I hadn't.  Where do people come up with this stuff?!?!  

I'll start out by saying I'm happy.  I really am.  And thankful.  I could spend the rest of my life thanking people and it wouldn’t be enough.   I'm not depressed or even melancholy.  The only sadness derives from the realization that literally nobody in this world loves life more than I do.  Maybe the same, but not more.  So, yeah, when I see my friends and my sister start a family, and every conversation now centers around their kid.... do I sometimes get annoyed, jealous or frustrated with life? Yes, I do.  I just want us to relax, enjoy being newlyweds, enjoy everyone else’s kids and look forward to that next stage in the coming years.  Starting a family with my best friend, there's not anything higher on my bucket list. 

But ya know what?  You can't plan life.  This is something Lindsay imparted on me very early into our relationship.   She very much lives in the moment and I always admired it.  Sure, no one has more fun ‘in certain moments’ than me, but I’m really good about keeping an eye toward planning tomorrow.  Too much so sometimes.   I always knew the exact time.  She never did (sorry babe!).  But it has worn off on me.  And the only way to successfully cope with your own terminal illness is to compartmentalize it all and literally live day to day.  Try to make today a good day.  Sure, you got to take care of future plans and make sure everything is sealed up tight.  But you put on your hat for that.  I'm talking about the pure and raw emotions of living.  Those can only be fully appreciated in that singular moment.  So that's what I do.  And I’m getting good at it.  I draw some inspiration from how Jim Valvano (“Jimmy V”) lived his life both before and with his terminal illness 2+ decades ago. This video of his speech never gets old and if you haven’t watched it in a few years, please do now!

None of this is said to reflect the hope I still have for a prolonged life.  We are excited to start this new treatment and I’m always optimistic.  I never leave any game of significance early because I always ask myself “if we come back and win, will it be the most improbable outcome in history?”  If I answer No, then why leave.  Who doesnt love an underdog story?  No one more then me.  And with a feeding tube, unable to talk, spit, swallow or walk without a ventilator, I still believe in miracles.  Its why Frosh year of college in 2001, when everyone went to dinner, I sat alone and watched the Bears win back to back games in the most improbable fashion capped by Mike Brown’s OT interceptions.  That is the eternal optimist in me and that won’t ever go away.  I’ve just come to the realization that my end point, whenever that is, will be caused by ALS (I hope).  I said I hope because as hard as it is, you get the chance to say and hear a lot of things you wouldn’t get to if you died suddenly.   And I am so grateful for that.

The opposite of that, though, is seeing your family and friends helplessly suffering so much.  I feel the same, so helpless to their suffering and have twisted messed up feelings of guilt because A. I’m the reason for everybody’s suffering and B. My suffering will likely end before theirs does. I know that’s not how you should think but you do.  I’ve never been through a crisis like that for anyone close to me, really.  We’ve certainly had some acute losses, most notably my Uncle Dan Hastings, RIP.  My Dad has 7 siblings and my Mom has 2 and everyone is still around and pretty healthy.  It’s funny, Linds and I were talking about it a few weeks ago and I commented that at about Age 27 I started to comprehend that my parents were in their mid-50’s and wouldn’t be around forever.  I kept waiting for that shoe to drop, that panicked phone call that changes your life forever.  I knew someone very close to me, at some point soon, was going to die or have something really horrible happen to them. Then, all of a sudden, it’s YOU.  29 year old you, in the best shape and healthiest form of your life.  Just as your career is taking off and you know you’re with the girl you will spend the rest of your life with.  It’s just….. messed up.

But you have to keep laughingat you, at me, at ALS and all things in between. It’s what keeps the sanity.  How can I not laugh when every time I enter a new environment, THE three things I always do immediately is assess the paper towel, the garbage and the bathroom sink situations haha.  Have to make sure I have drool rags, a depository for drool rags and a nice bathroom/sink set up for overflows when I put my smoothies and/or drinks down my feeding tube.  We went to a Barcelona Pub and somehow 20 bags of unopened napkins – the fancy soft 5 star hotel/restaurant napkins – were in a box next to me.  I snagged 2 of those bags and it made my day!  I was so excited, my lips weren’t going to be chapped on some rough, cheap paper towels tomorrow.   Upon reflecting, you can only laugh and think - what is my world coming to?!?!  And then you laugh some more.  This shit is funny.  Life is funny.  So laugh.

Still searching for inspiration, I went back and googled a little more.  “How to prepare for your own death” I think was what I searched for.  Well, I scrolled thru the Google results and came upon a blog.  I clicked on the blog and sure enough it was advice on dealing with your own death.  I look down to see what he had to say and all that was written, in bold Times New Roman font was “CARPE DIEM.”  I kind of chuckled, wondering if it was my alter-ego that penned such a punful, simplistic approach to dealing with death.  Then I remembered my sister’s Christmas present: a nice, elegant chair pillow, which when I turned it around had the cursive words inscribed “Carpe That Fucking Diem.” She knew that was so me.  I thought hmmm, maybe that is the answer to the meaning of life and writing 11 single lined blog pages could really be condensed into two Latin words:  Carpe Diem.  

Merry Bleeping Christmas

LOGISTICS

-I forgot to mention that Lindsay and I have moved.  If you want our new address just reach out to us or our families.   We continue to be amazed at all the hilarious, thoughtful and uplifting cards/notes/everything that you all have sent to us, especially all the warm holiday wishes and  the kids’ drawings (KINLEY!) that continue to be sent!  Thank you all for cheering up our days.

 -Health Update:  No statistically significant positive effects seen thus far from the Stem Cell surgery.  HOWEVER, this is normal.  I should have mentioned in my last blog that in the Israel trial, everyone appeared to stay on their same disease progression trajectory up until 2 months Post-Op.  Then in the next 6 or so months is when the data gets interesting.  Symptoms were reversed in some people (as measured by your FRS ALS score; FVC breathing scores and the strength tests) and stabilized in others for that time period.  That’s where the data ends (thus far – the Phase II trial in Israel wasn’t that long ago).  I’m 1.5 months post-op so if I did get drug (and not placebo) and it does help me out, I should start seeing some positive signs in the next few months. 

- Special shout out to Kevin Cullen, brother of Maureen (Cullen) Chmel and Randy Chmel, Uncle to one of my best friends (I call him cousin) Matt Chmel and my great cuz Lizzie (shared a drink or 100 with her at U of I J).  Kevin has allowed us to literally drain all of his Marriott points he’s worked so hard for his entire life so we can stay at various hotels for free throughout this ALS journey.  We’re talking thousands and thousands of dollars saved because of one man’s generosity.  And he does it with the same calming smile he has on his face every time I’ve ever seen him.  Just a stand-up guy and we appreciate it so much.  The Cullen/Chmel family will always be family to us.  THANKS KEVIN!

-Shout out to all my friends who have had babies this year or have become pregnant, including some of my best friends as well as my very own sister, who’s due in a couple weeks!  I am so excited for Sara and Mario (and for me!).  This little girl is going to be the best Christmas present for our and Mario’s entire families!!  These hormonal storks have been flying around like crazy birds this year.  Cuuuuz I can feel it coming in the aaaaaaiiiir tonight, oh lord.  A lil Phil Collins/Risky Business shout out.  

-I just read a story that in the United States for 2014, the #2 most trending topic on Twitter and Facebook both…. For the ENTIRE year (right after Ebola)…. Was the ALS Ice Bucket Challenge.  I’almos peed my pan’s when I hear’d ‘dat. You guys rock!

MOST IMPORTANT

Many of you know I’ve made a new best friend this past year. I met 11 year old Cam Schwartzberg at an MDA event last summer and quickly fell in love with Cam’s awesome personality,  his pure and innocent smile, along with his ‘never give up… fight fight fight’ attitude he displays every day as he battles a rare form of Congenital Muscular Dystrophy (CMD) in a wheelchair.  Cam, his parents and my family have become great friends and Cam always has a way of picking me up when I’m feeling down.  I encourage you to PLEASE check out his website for more information on his battle and how to help.    I would give up my life in a heartbeat to see Cam fight through his battle and come out on top.  Children have a way of inspiring that only us adults could dream of.

NEED HELP

Cam is living in a 3 story house with no wheelchair access.  He is too big now to be carried by Mom up and down the stairs to go to the bathroom (there is no bathroom on the first floor).   The poor kid is literally holding it for as long as he can before his Dad comes home to carry him.  Their Bank (not named yet) has been pathetic and refuses to work with them on selling the house (they are underwater on it).  Their home does not allow for wheelchair lifts up and down the floors.  Even if it did, they couldn’t afford to staff $20K wheelchairs on each floor for Cam.  The bank does NOT consider this a hardship.  Anyone with any connections to news outlets that may want to cover this sad story of inspirational disabled child vs. the Big Bank, or offer any other advice on to how to proceed,  PLEASE contact me immediately.  I so much appreciate this.

Now onto the blog… Christmas has forever been my favorite holiday.  Oh gosh there are so many reasons for this I can’t begin to name them all.   But since I was born, my parents always made Christmas “THE HOLIDAY.”  I have the happiest, best and funniest memories growing up from Christmas season.  So I decided this time to just reflect on some of my favorite Holiday stories for the 31 years of my life.  Some of them are sweet, some of them are funny and some of them are so far past the gross line (for some of you) then when you look back, the line is now a dot to you! Yes, that was a “Friends” quote so you can all make fun of me for knowing it.  HOWEVER, when my brother and I chose complete every-season DVD sets a few years ago for Christmas… I went for “Seinfeld” and “Cheers”; HE went for the complete “Friends” box set.  We are accepting ridicule for Josh at info@fightlikeachampion.org.

I’ve always tried to make this blog as clean as possible…. For what I’m used to anyway :) (I got comedy goalies that read my drafts and say “Hey Eric… you might want to think about your WHOLE audience before including that vulgar word/comment/story!”).  I feel like part of the hilarity is taken out once it hits the press room; though I understand it.  But this time I'm just going to tell you stories of how I remember them, with ALL vocabulary included.  So don’t have your kids read from this paragraph forward.  And if you think you might be offended or cringe, just don't read it :)  But I have ALS, the metaphoric clock is ticking (or just the actual clock?) and because of that, to be blunt, I'm less worried about offending a few people at the expense of making a whole lot of people laugh at our funny families.  Now that I've scared you, you'll realize they aren't really THAT bad.  Just mostly funny. 

1)  Josh’s Favorite Christmas

Let’s start out with one of my favorites, albeit a long one.  It was circa 2001 (I believe) and my brother Josh was an aspiring 7th grader who ran his mouth like no other (I tell you honest to God, my parents, Sara and I had several discussions about if/how Josh was going to maintain ANY friends growing up and what we could do about it.  He was so argumentative with his friends and such a prick.  Years later – I think he has more friends than any of us!  What do we know).   I was a senior in high school and finally ‘allowed’ to have a couple drinks in my home at family gatherings… nowhere else but at home... It was a don’t ask don’t tell policy.   So I got a decent buzz going and my sister Sara and I think, man we should give Josh a drink.  I think we can all probably recall the exact moment we had our first drink.  Take a moment to think about yours if you remember.   I had my first drink in 7th grade as well (hence why I thought he should have one!)… Tommy Bart and I snuck into my parents garage, pulled out 2 beers, snuck them down to the basement to FINALLY try this amazing adult apple juice that everyone devoured and told the funniest stories after drinking it.  I was pumped for this miracle milk.  I was gonna be a man.  A Miller Lite!  ONE SIP OF HEAVEN…. and I spit the whole damn thing out on my shirt…. I turn to Tommy and say “How the fuck do people drink this shit!?!”  Who knew Franzia tasted so good?!

Back to Josh…. He had seen me drink.  Sara had a couple drinks by then.  So Sara and I (mostly me) force him….ehhh force is too strong of a word…. we ‘strongly encourage’ him to have this new drink, Red Bull and Vodka.  Anyone that knows Josh knows he’s as competitive of me.  Of course, he slugs down the drink in record time (unlike my wimpy first drink experience) and he starts acting (go figure) drunk.  I’m trying to wrap my mind around the compromising situation I just put myself in - how could I be so dumb - while Josh sneaks another drink when no one was looking.  Little Joshie is now hammered but my parents are cooking up a storm in the kitchen and don’t know a thing.  My Uncle Dave Von is just generally conversing in our bar room and asks Josh about his basketball team.  To which Josh replies “Hey Uncle Dave… Go Fuck Yourself!”  The bar room goes dead silent.  Pin drop one.  Pin drop two. I didn’t know if Uncle Dave was gonna smack him or laugh   Finally he yells “WHAT?!?!?!” and Josh replies “You heard me, go guck yourself!” Everyone in the bar room realizes little Joshie is drunk, but based on all the crazy childhood stories my Uncles have told me, they just simply awkwardly laugh it off, knowing the day of reckoning is coming with my parents soon enough.  I am scared shitless now.  I mean there are likely brown spots.  I am the oldest and the culprit and my parents are going to rip my head off.  I grab Josh, drag him to the other room and chew him out.  He is twice as combative with me… Josh’s childhood argumentative style and alcohol are mixing like sharks and, I dunno, a tornado…. Sharknado? (Calling Tara Reid… Now I know where she’s been for 15 years!).  But I’ll never forget his 13 year old comment… “Alcohol is fucking awesome!”

I hang with Josh in the basement to guzzle water.  It helps some but not enough.  My Mom now knows he consumed some form of alcohol and, in true Von Schaumburg fashion, Sara and I pass the blame on him!  My Mom is yanking him around yelling at him like the sun won’t rise tomorrow but he is a little more coherent at this point.  Finally the parents go to bed and Josh goes right back to one more drink, without us seeing him.  We hadn’t had any real serious adult conversations to this point in our lives.  But we go into the spare bedroom, where he proceeds to tell me about this crazy crush he has on this girl, shows me all their exchanged IM’s (remember IM’s!?!?) and asks for my advice.  Man, I feel like a proud Dad.  He came to me with some serious questions, and I’m going to show him that I’m there for him.  I lay out the whole plan of attack for him to get this girl…and just as General Eric is going thru the MOST important part of this battle plan… I turn in time to see him barf uncontrollably all over the bed.  And were not talking Paris Hilton’s toy dog barf… we’re talking Godzilla meets Jaws barf.  I am again scared shitless…. My parents are going to kill me!  I start running around frantically thinking of what to do, and my best idea was gather up all the sheets, blanket and pillow cases, and in a t-shirt, shorts and sandals I run with the evidence as fast as I can in 3 feet of snow to the nearby prairie field and dump it all out there (animals will eat throw up right, my 18 year old mind is thinking?).  Then I gotta scrub down the bed (I told you – Godzilla/Jaws), re-furnish it all and light as many candles as I can find to hide the smell.  Mission accomplished.  We didn’t tell my parents about that for years!!

2) The Split

Since I was the first Von grandchild, my parents always had Christmas Eve at their house.  Including my first Christmas Eve ever, when my Dad was out picking up some last minute food when something caught fire in our apartment (that I don’t remember) and there was my 28 year old Mom, holding me in a small blanket, with shit in my diapers, going door to door yelling for people to get out! The fire department came, a lot of stuff burned up, but the presents were saved, and people still came over in the smoky conditions.  A tradition was born.

For as long as I can remember, both my Mom’s and Dad’s sides would come over for Christmas Eve.  That all changed about 5 years ago when we decided to split up the families and do separate Christmas parties.  There are many theories to why this happened but I do know a few facts.  The Von Schaumburg’s are a loud, boisterous crowd where many times (since ALS) I have sat down in the other room and just listened and laughed to how loud we all are!!!  It’s just everyone literally screaming and laughing over each other.  That’s just been engraved in our DNA.  We are all yellers and story tellers (always with a tad of embellishment) …. Which makes not being able to talk all the more frustrating!   Their hangout was always the bar room.

My Mom’s side is smaller, more civil, quieter and more respectful (I got a perfect mix of genes!).  They would occupy the dining room and the living room.  No one seemed to cross over much to the other rooms and mingle with the other sides… (except one consistent person which I will mention next).   My immediate family would go back and forth between the rooms but it was like mixing a shitload of vinegar with water.  Both amazing families but equally different. 

But what I personally think helped seal the deal on the Split was a few incidents over the years involving my Dad drinking with the Von brothers and my Aunt Eileen.  It is a known fact that Aunt Eileen hates onions and can’t drink caffeinated coffee.  My Dad claims for years that he put onions in all the potatoes (while telling Aunt Eileen there were no onions in it) and for years she ate them.  He tells said story to Aunt Eileen. “Hey FYI – For the past 8 years I’ve been putting chopped onions in those potatoes!” What. A. Dick.  But it gets better (or worse).  He tells Aunt Eileen he made a pot of decaf coffee when in reality it was black and bold!  She couldn’t sleep the whole night.  See what I’m saying about my family?  Just got to shake your head sometimes haha (SMH for you youngsters).  But my Dad and Aunt Eileen have always traded funnies with each other… they both know how to give each other crap yet hug, love and joke about it as they respect and love each other to death.  One Christmas Eve greeting went something like this “Hey Bob, I see you gained some weight since I last saw you…” and his response “Hey Eileen I see you got a pimple this Christmas.”  I cringed pretty hard!  And I don't think either insult was true! My Aunt Eileen and Uncle Mike have helped me tremendously throughout this journey, always sending articles, reaching out to contacts that may be of interest to us, donating and just doing anything possible to make my life easier.   These stories are what have made the Holidays what they are…. A lot of laughing, loving and cringing good times.   It was so great seeing my Mom’s side two Saturdays ago!  Big props to my parents for cooking two large meals just days apart to accommodate both families.

3) Memories

As I sit here with ALS, your mind naturally wonders more than normal on how you will be remembered when you pass.  I don’t want “Eric Von Schaumburg” to be taboo, thinking of a life shortened (if that ends up happening) and unfulfilled wishes, potential and good-will I could have done for society.  I want my name to bring up happy memories of someone that, when it all boils down, just really really really loved life. 

So it is with that premise that I would be remised if I didn’t honor the memory of my Uncle Dan Hastings, who passed far too young from a heart attack in 2006.  This really shook everyone’s world and his memory is with us every day.  Uncle Dan was one of a kind and was really the only one on both sides of the family (along with his son and my cousin Mike) that consistently crossed the ‘Berlin’ wall that divided the families on Christmas from the dining room to the bar room.   And how could you not love him?  He was just the most likeable, caring, never-in-a-bad-mood man I have ever met.  His wife, my Aunt Carole (my Confirmation Mom), has been the true matriarch of our family, reminding us what the good Lord can do for us.  She has been a mother figure to her sisters, her kids, her grand kids and us nieces and nephews.  There’s no doubt times got tough for her all-around when Uncle Dan suddenly passed away, and she’s dealt with other horrible tragedy as well.  But her positive uplifting attitude, the joy that she brings and her generosity to STILL give us all great Christmas gifts all those years– even Lindsay (and would do so down to her last penny) that makes us all feel a great sense of pride knowing her.  She is an amazing person and one that everyone in our family looks up to.   RIP Uncle Dan.  Thanks for ‘breaking the wall’ and leaving such a great imprint on our lives.  

4)  Grandpa’s Christmas Tree Farm

Another holiday tradition conjured up by the queen of holiday traditions herself… MY MOM :)  Every year we would take these “Griswold” trips to Grandpa’s farm (the name of the place, not my actual Grandpa) to cut down our tree.  These seemed like 2 day trips.  I swore we drove about 6 hours each way, but only recently did I learn it was a mere 30-45 minutes away.  Every year the frustration on my Dad’s face would increase. Finally when we were old enough to hear cursing, a common example of a phrase he might use is “Let’s just cut down a fucking tree and get the hell out of here….NOW!”  But, per early tradition, we had to walk around and see every god damn tree before dwindling it down to… I dunno… 125 trees.  This process went on forever until we found the perfect tree.  It really was a Griswold movie.  One time the tree cut and fell the other way, crushing my sister and me to the ground.  The next year, Dad tied the tree on the van…. Only to have said tree fall off the van roof while we were driving on the highway.  One other time, we got a tree way too big for our place (Only now looking back do I think…. Did you ever consider measuring floor to ceiling?  How could such a comedy of errors occur!).  Many others, the trees were cut crooked and we spent all night jamming it into the tree stand.   But the catch that always got us… was the promise of lunch at our favorite hot dog place along the ride home.  I still have dreams about those sweet, dripping, juicy Wisconsin sharp cheddar cheese fries melting in my mouth.  Finally, around my sophomore year of high school, I started putting two and two together….. I didn’t need a ‘free’ lunch anymore.  There were plenty of awesome hot dog places within 2 miles of our house.  I had some money from punching in fruit/vegetable codes as a Dominick’s cashier (thanks Mr. Atkinson), and, of course, from Mom and Dad!  As the years went on, the people that went dwindled, Sara went along for a number of years, but I think my parents agreed that this was the last year for it (it was down to only them two by now!).  Moral of the story…. You might not always thoroughly enjoy the process while doing it, but man those were fun memories looking back now.  Traditions are what make the holidays…the holidays.

5) Uncle Buck

Every year for as long as I can remember… we would always ask only ONE major question as the family started trickling in for Christmas Eve.  Was Uncle Tom drinking vodka tonight? Psss psss Uncle T…vodka…question mark.  We call him Uncle Buck for his uncanny resemblance to John Candy and for being (like Candy) one of the funniest human beings that ever walked this planet.  Uncle Buck mixed with some vodka meant Christmas Eve just got 10 times better immediately! Aunt Kayla and I would always start whispering and plotting (“How’s he been doing?  Is he gonna drink vodka tonight? How can we encourage him? Billy is driving home right? Did Dad get him something better than Smirnoff this time?).    He’s had numerous back and other issues so some years he can’t do the vodka, but when he can, and the families stay late…. Those are the best Christmas Eve’s ever haha just story telling all night long.  The guy is so damn hilarious.  Poor Aunt Georgia, thanks for driving those years so we could get a stand-up comedy show from Uncle T…err Buck!

6) Josh’s Christmas Eve After-After parties

All growing up, my friends would spend Christmas Eve with their families.  The only one that ever came over was my buddy Shep and his family.  No one would ever think of having a friends gathering on Christmas Eve. That was family…. Until Josh.  In late high school he’d have a few kids over at about 10:00 or 11:00, and the parents would be in bed shortly after.  The gatherings grew and grew each Christmas and hit his peak around his Junior/Senior year at Notre Dame.  There must have been 30-40 people there at my parents, spread throughout the house inside and outside with my parents blissfully sleeping in a warm deep haze after working so hard then getting tipsy.…. everyone was either/all drinking, smoking, gambling, taking cannabis and always…. Laughing.     These Christmas Eve after-parties are where I formed a strong bond with a lot of Josh’s friends.  And man they were a lot of fun.  These guys and girls have been there for me through this whole ALS journey… and I no longer look at them as Josh’s friends.  They’re just friends now.  There has been many ALS fundraisers I have not asked my friends to come to (these are for ALS organizations and I feel like I’m always bugging them already with all my personal shit, so awkward all around).  But sure enough, Josh will post it once on Facebook and 10-20 of his friends will be there for me on two days’ notice.  You know who you are and thanks.  Hell, Josh’s friend (and now just ‘my’ friend) Timmy Long is who came up with the whole barn dance fundraiser!  So for that as a backdrop I wanted to look back at some moments from these Christmas Eve after-hours parties:

- Scott and I playing Madden drunk and high from a cannabis brownie with me just staring at the screen watching my players barely moving and getting pummeled.  In my mind, the players would be racing around, then I’d snap out of it and realize my guys were barely freaking moving.  It reminds me of some of the police reports I’ve seen with stoned people getting pulled over for doing 5 mph in a 30 mph zone!   Then me losing money from playing every single game and trying to double down on the next game immediately.  I’m a sore loser.  What can I say?

- My sister Sara and my usual late night talks, always both the right amount of tipsy.  We always had the best talks.  Just catching up on life and going into deep thought and ponderance on many things until she’d give me a glimpse of her hilarious, mischievous smile and we’d both end up on the floor laughing.   Sara is always the best at that.  She always gets me thinking another way on things, like I believe I’m mentioned before in these blogs.  Some of our 1 on 1 talks I wouldn’t put any talks above.

-My buddy Shep who never uses cannabis, taking a hit of someone’s joint (while drunk) then going inside down to the basement and rolling on the floor like a laughing hyena.  This literally goes on for a half an hour.  I would say “boo” to him in a sudden, stoic voice and he would fall back down rolling in circles laughing.  There were about 10 of us there and it has to be one of the most hilarious sights I’ve ever seen.  I’m talking rolling around laughing so hard.  Oh Shep.  He hasn’t used cannabis since haha.

-Us taking Adderall all night long playing cards for good money, drinking all morning,  jamming out to music until we finally looked to see the sun had risen! We finally passed out at 9 AM, only to have Sara wake us up at 10 AM to open presents.   Man that was the only time in my life I would have given back presents just to go back to sleep haha.  "Ohhh yeah great (yawn) sweater Mom (yawn), I really like it (eyes close)"

-Then as the years went by, Mom and Dad started staying up later with us… everyone was of age now so there was no need to hide anything.  So my Dad and I are drinking a beer, talking life and I ask him what was it like when Mom had her issues getting pregnant.  That had to be an experience you'll remember forever.  He goes on to tell me, but in true Von Schaumburg fashion, he gives me WAY too many details… like how he had to bring sperm in to the doctor in a Tupperware container.  Stuff like that that you never ever ever would want to hear from your Father!  We look up to find that (like always) we were talking way too loud and 6 of Josh’s girl friends were just staring at us disgusted beyond belief.   But a funny thing happened once Sara, Josh and I became adults.  Our parents were no longer just our parents... they were our friends.  And that shift has continued from that point on.  I truly consider them just best friends at this point.  They parented us extremely well (I literally had no idea my Dad was so inappropriate until after high school! If I didn't come home with straight A's... there was a lot of tough explaining to do.  And damnit I better work hard at everything I did growing up).  But now, that parenting is over and we bond just like the friends we would have been if we grew up together.  It's just like hanging out with two of my best friends.  Its such a cool thing.  

-Two girls passing out on the basement floor (names excluded) with no one knowing about it.  Their Moms’ frantically call on Christmas morning looking for their girls.  We initially tell them “No we’re sorry, there’s no one here” as Josh starts anxiously making calls to see where they’re at.  Then we head down to the basement just to be confirm… sure enough, two girls passed out on the floor, no blankets or pillows, same clothes still on from the day before! Classic.

- Josh inviting a large group of people over at around 9:30 -10:00 a few years ago.  Then Josh decides to pass out in his room while people start flooding into the house and down to the basement, per standard operating instructions.  My Mom is like, what the hell is going on, who are all these people and where is Josh?!?!?  She finally solicits my Uncle Buck to go down there and kindly tell them Josh is sleeping and they have to leave.  That translates to Uncle Buck going downstairs and screaming “EVERYONE NEEDS TO GET THE FUCK OUT OF THIS HOUSE NOW!!!  I SAID NOW GOD DAMNIT (chair is slammed)!!”  Then he just starts bursting laughing… even he couldn’t hold it in.   

Crazy fun times folks.  Crazy fun.

7)  Christmas Morning Presents

Once I was old enough to know, yet my brother and sister still believed, I would listen to my Dad gathering and placing presents.  Except this was no normal gather after a night full of drinking on Christmas Eve.  I would hear shit banging all over the place, typically a few “Fucks” followed by my Mom yelling at my Dad (I couldn’t hear about what… but she was definitely yelling!).  I just thought it was the most hilarious shit ever, but was still trying to get a listen to see if I could hear what my gifts might be (like they would be discussing the actual gifts… I don’t think they had any idea what the presents were at this point!  They were just trying to…. Survive and Advance).  Then when we’d get up, my Mom would always make us wait at the top of the stairs until she took embarrassing pics of us walking down the stairs every god damn step of the way (see pic… my “NO SEE ZONE” was almost out there for the world to see… and it’s framed in my parents’ house!).  There were always hundreds of gifts… it was and still is embarrassing how much they get us.  I remember getting like $1,200 worth of stuff and visiting some friends who got like 3 things.  And my Mom is always meticulous to the last penny on spending for all of us.  I remember Sara getting a cheap-ass .99 cent pair of gloves, because she was probably 99 cents under the spending amount.  To say we were spoiled would be understatement. But back to the gift gathering.  Every year there were always a few presents nicked or wrapping paper mangled or name tags off the gifts (until my Mom got smart and just started writing our names with big black marker on the actual wrapping paper!). 

Then one year, back when Josh believed and I was old enough, we get done with presents and Josh is crying his eyes out.  My parents rush over to him “what’s the matter Josh?”  “I wasn’t good this year… Santa gave Eric and Sara way more gifts.”  Well, given my Mom’s pension for equality down to the last penny, you might as well have stabbed her instead of said that.  Without notice, my parents are downstairs with two Sega video games for Josh (one of them was Toy Story I remember) and a $100 gift card to something.  “OHHHHH Josh!  Come here…. Look back there on the other side of the Christmas tree!!  We must have missed these gifts from Santa!!”  Christmas was saved.  What a brat.

8) Thanksgiving

Every year Aunt Kayla and Uncle David are grateful hosts of Thanksgiving.  It’s always a blast, with about 15 people watching football, drinking beer and… you guessed it…. Laughing our asses off.   There always seems to be a few of us that end up feeling no pain by day’s end…. Like me one year, where I ended up taking a full, unopened pie home.  The next day my Dad felt so bad he dropped it back off at their house and, to his credit, he even told them he accidentally threw it in the trunk and saved me the embarrassment.  That’s what “Dad has your back” means!

Also on Thanksgiving after dinner each year, my Aunt Kayla started this tradition where everyone pours a Rumchata shot and we go around and say what were thankful for and then slam the shot.  Of course, we can’t be serious even for 10 minutes so there is always a great mixture of all of us trying to out-gross and out-vulgar what we’re thankful for (most every one of those comments I even can’t write in this blog),  mixed in with a portion of each person’s serious thoughts on the year and what they are thankful for.  It’s a tradition that I really look forward to every year.   Some of the ones I can write here include Josh, with a stoned face, saying he is most thankful for “my beautiful girlfriend Mel’s rack” and this year me being thankful that “my penis is not a muscle so the ALS can never touch that.”  Especially with the challenges we faced throughout the year, and this recent ALS challenge of ours (I no doubt feel like it’s ‘our’ challenge – that’s how my whole extended family and friends has made me feel since Day 1) we all shared laughter and seriousness about what family really means to us and how grateful we are to have each other.  We may be loud obnoxious buffoons sometimes, but we have family bonds thicker than any blood.  I can safely say I would die for anyone in my families.

9) Silent Night

Ahhh yes.  20 people’s eyes just lit up.  How could anyone ever forget a couple years ago when my Aunt Eileen boldly told us all to gather in the Living Room, she had a present for us.  She had a song that she was going to sing.  Was she serious (we all looked at each other and pondered)?  Was she going to announce her and “Uncle Mike” were going to make it official (they are basically married at this point)?  Was she going to be funny or silly?  She’s good at that too.  We all gather around and Aunt Eileen starts belting Silent Night like it’s no one’s business.  The first verse I couldn’t stop laughing because I really didn’t know if she was serious or not.  But to her credit she sang a beautiful rendition of ‘Silent Night’ and got a rousing applause at the end.  Then things kind of got off track when she had Uncle Mike come up to sing Jewish songs and he looked like all us other guys would have felt – get me off stage singing! Ahh what a great night that was.  It’s really a shame I don’t get to see my cousins Erin, Shelley and Shelley’s husband Jeremy more as they, along with Aunt Carole, live 4 hours out in Indiana.  It is great having family living RIGHT NEXT DOOR to my sister, though, with Mike, Leisa, Caitlinn and Grace.   When the whole family is together, we have such a blast.  I’ve always had a great, very close connection with everyone in our family.  They are some of the most fun and uplifting people I know.   We had yet another great time this year.

10) Last year for the Von’s Christmas Eve party, we decided to mix things up and do a cousins’ grab bag exchange playing a game my sister came up with (Now pass to the left, left, right, right, left, right – it truly never EVER got old doing that….and somehow we all had our own gifts most of the time lol).  We were all finally adults now.  Well I thought, the Von’s are extremely liberal, everyone’s gonna ‘spice up’ their gifts with something funny and/or Inappropriate… or as my family calls it…. Appropriate.  

So I order an XXX rated board game to be part of my gag gift.  Man, everyone is gonna laugh so hard, especially when Mario, Billy, Zach or Josh get it.  I got that grin on my face…this is gonna be great.  But as fate would have it, one of my younger twin female cousins Rachel gets it and she does not want any part of it…. There is no way she is bringing that game home! Awk. Ward.  With a capital AWK. So we did a little switcheroo and she ended up with a new gift.  Thankfully the parents weren't around for that.  Chalk that up in the “FAIL” bin for me, which I’m used to by now.  I’m glad to report I got my mind out of the gutter and bought a Panini Maker and Grill this year, which as fate would have it, Rachel ended up with it again!!  Zach, Billy, Rachel and Lauren.  The best Chicago Von cousins I could ask for.

11) The parties.  My sophomore year of high school, my parents went out East for a week, just after Christmas, so naturally I had to throw the biggest parties possible (which ended up being on the low end of awesome parties we threw at my parents’ place…. One spring break, with my parents gone, we decided to switch every light in the Family Room and Basement to a black light.  Every single one.  I had keggers every night, with a Techno Rave feel to them, and ended up pocketing $1,320 in 5 days of parties just by selling $5 red keg cups! Three of the nights I didn't even drink, just wanted the money.  That’s really where my sales career started).  Anyways, this is sophomore year, a little more risky than senior year.  There was a crazy snowstorm that year on the day after New Year’s Day  (which was when the parents were coming home).  So the night before we have a party for the ages… everyone in the holiday spirit, everyone having fun, everyone sleeping over.  Everyone just happy and loving each other and life….so full of youthful enthusiasm.   I remember that party vividly, you could feel the love, warmth and friendship in the air. 

So my parents always had this nice Nativity set of Christmas statues, all the characters including the Shepherds.   One famous story we still recall was my buddy Jeff Jesernik getting so drunk that he picked out one of the  Shepherd’s from the Nativity Set and starts conversing with the statue.  You have to picture Jeff, totally drunk, using some ridiculous combination of quasi-Mexican, quasi-European, quasi-Beavis and Butthead accent talking to this personified Shepherd and pouring beer in his mouth (which was really just beer dripping down from the statue).  “YOU MUST PROTECT MY BEER!” Jeff proclaims in that odd crazy accent.  “I FEED YOU BEER THEN… YOU MUST PROTECT MY BEER!”  “YOU LISTEN TO ME, WE FORM ALLIANCE… YOU MUST PROTECT MY BEER!”  So all night, whenever I would pass it, sure enough there would be a beer behind the Shepherd, which he was clearly protecting for Jeff. It was just something about Jeff's accent, and that we would catch him doing it alone (so he wasn't 'playing to the crowd') that had me laughing so hard.  Oh Jezzy.  Kid cracks me up.  The next day I frantically clean everything up spotless as can be, running around with 8 bags of garbage contemplating where to dispose of them in an 9 foot blizzard outside and alas…  All is good!  I can’t believe I snaked out of this one with the parents, with nothing in the house broke!  “ERIC ROBERT… GET YOUR ASS UP HERE!  WE PURPOSELY DIDN’T CLOSE ANY BLINDS ON THE WHOLE FIRST FLOOR … AND SURE ENOUGH THEY ARE ALL F-ING CLOSED NOW!”  Shit. Busted.

12) Meeting the Mustos

Every couple of years around the holidays we would try to meet up with My Dad's sister's family - The Mustos.  They lived in New Jersey so we always met in Ohio somewhere and it was always out of control weekends.  Many stories are too old for me to remember, but I do remember one night.  I was 12 or 13 and they decided it would be a fabulous idea to leave ME to babysit the 5 younger kids by myself.  We had Sammie, the youngest, barely 2.  We had my sister Sara her bestie cousin Amanda at about 7-8 years old, jumping like crazy kids from bed to bed (while I'm scared shitless they are gonna crack their heads open) and then my brother Josh and cuz Michie a little younger playing hide and go seek in and around our 2 connecting rooms.  Great game to play for your babysister.  I'm losing my damn mind trying to keep track of all of them, while my parents and the Musto's gingerly come strolling home laughing with about 30 lbs of calzones and stromboli.  As I turn to my Uncle Musto to tell him what a handful all of them were, and how could they do this to me, he simply looks at my blankly and says "Weeeee Gooooooot Strrrooooooooomboli!!!!"  I'll never forget that line haha.   And per normal procedures, my Aunt Anne was awake for all of 3 hours the next day :) We never get to see them enough so I always cherish those times.

13) Mickey Foley’s Christmas parties

Yes, this is a gross one. Sorry. Every year from high school all through our college years, my buddy Mickey Foley would have awesome holiday parties.  Looking back, these were the best.  Talking to Mr. Foley for hours and picking up his favorite saying of all time (“Don’t be a one-way Motha Fucka!”).  It is actually a line to live by.  Don’t care about only yourself, care about others more.  But to have Mr. Foley put it so eloquently to us was something I’ll never forget and still think about haha. 

So in high school, I don’t know much about tobacco and its various forms.  I truly did not comprehend the whole chewing tobacco craze and what it entailed.  So I walk over to a table of guys, Brett Frey has a bottle with tobacco juice in it.  Now in my innocent mind, I think that before you ‘chew’ tobacco there must be some juice you have to squeeze out of it or something (I really wasnt thinking).  So the guys tell me they’ll give me $20 to drink it.  I’m a little tipsy and I’m thinking… whatevs… a little tobacco juice they had to squeeze out before ‘dipping,’ no problem.  So I take a swig of this bottle (my stomach is queasy right now typing this) and immediately have the worst reaction to anything in my entire life, and still true to this day.  I run to the can and throw up for a solid half an hour.  I get home, I’m hugging the toilet the whole night.  I wake up for racquetball with my Dad, Brett Frey and his Dad.  I can’t even make it to the court I’m barfing so much.  That’s when I was informed that the bottle I drank was actually everyone’s tobacco ‘spit’ that they had passed around for a while.  Grossest. Thing. Ever.  How could I be so dumb?  We’ll save eating a frozen cat food treat for a different day.

14) THE FOG BOWL

Ahhh yes.  The infamous Chicago Bears Fog Bowl against the Eagles on New Year’s Eve circa 1988 Crazy to think I was only 5 years old but remember it like it was yesterday (Funny how good my memory is for sports and how bad it is for everything else).   We were in New Jersey, planning to spend New Year’s Eve at my Grandparents when a heated argument ensues with the Chicago sons and my Grandpa about the Bears vs. the Giants (this happened frequently).  My Dad got so pissed off at my Grandpa that he said, fuck it, I'd rather be caught dead than watch a Bears playoff game with THAT guy (pointing right at Grandpa), we are going home now.  So off we went on our 12 hour drive home, with one of those old van TV’s (you remember) that picked up network television.  The screen is foggy to begin with, throw in we’re watching the “Fog Bowl” and we can’t see a thing.  But we listen as Wayne Larrivee and Hub Arkush try to announce the game to us to the best of their own visions on the field.  I’ll never forget the 3 of us huddled around that TV, car is in park, as we “watch” the Bears beat the Eagles in one of the most famous games in NFL history.   Yes, we are a crazy sports family.

15)  Billy Jean – Man in the Mirror?

Just a couple of years ago, Lindsay and I did the Christmas Eve routine at my parents and then stayed in the spare bedroom per my usual Christmas Eve routine.  We both go in the bedroom, about to go to sleep, it’s pitch black out with just the faint ray of glow fading through the blinds from the snow-covered street light.  I forget who started it, but all of sudden we are singing “Billy Jean” and both break into a full dance rendition of M.J.’s  moves (its dark, thankfully!).  [Note: for the sake of  laziness, I will use MJ for Michael Jackson for the first time in my life.  We all really know there’s only one TRUE M.J.  And he don’t like little boys.  I just realized I could have been a lot more lazy and just wrote out his full name instead of this long note.]   Anyways… This goes on for a solid 15 MINUTES.  I’m dancing, shouting “OWW” as I spin around to point one finger to the sky and one directly at Lindsay as we attempt to moon walk towards each other “don’t go around breaking young girls’ hearts…. Oooohhhhhwwwhhhooo.”  Then we moved on to Man in the Mirror… “Gotta make that chaaaaaange” Lindsay starts belting out haha.  We laughed so hard we cried and I think we both dozed off in full out laughter.   That was one of the first times I really knew I loved this girl.  No music, no anything… just a couple of boneheads doing their best MJ impressions, whispering the lyrics as to not wake up anyone on a white glistening Christmas Eve. 

16) Santa Clause

We always got an arrival from Santa Clause at our Christmas Eve party…. I was too young to remember (as this doesn’t relate to sports) who always played Santa… Uncle Mark, Uncle Tom, a few others?  Anyways, whoever it was was clearly drinking before this Santa visit.  I was old enough, but my sister sits on Santa’s lap, asks for what he wants, comes down and drags me aside.  “Hey Eric, does Santa like beer?  I think he was drinking some tonight…. I saw a whole bunch of Dad’s beer in the garage, we should definitely leave some out there for him tonight…. You know how bad I want a Malibu Barbie House!”  Ahhhh drunk Santa!

17)  Linds and my Christmas

A couple years ago I wanted do some fun things for our alone Christmas celebration we have every year.  A little Christkindlmarket at the Daley Center for some Glug, then off to Sunda for the best sushi and sake in town.  Then, we leave and she doesn’t know a horse carriage is picking us up for a ride around downtown lit up Chicago.  But where the F is he?  It’s already 5 minutes late, I have no cell number….. let’s just start walking to a bar while I think of something.  Ahhh got it.  “Linds, stupid me, I left my ID back at Sunda!  We got to go back and get it!”  So we go back and wahhla, horse carriage has arrived!  We have one of the most fun rides imaginable with two single serving wine bottles from my bag…. Then we get dropped off at English Bar…. The place I originally met Lindsay….. Well, we’re in line for English Bar and…. GO FIGURE…. I really did leave my ID at Sunda!!!  We spent the next half an hour contemplating what the odds were that I made up that whole story just to really leave my ID there!  

18)  Wildfire Dinners

I’ll end these stories on a happy one.  Every year as per tradition, my immediate family always has a separate dinner a couple weeks before Christmas at Wildfire.  I have never not had the triple medallion filets there.  We’re talking 15 years, probably4- 5 times a year, always crusted triple medallions.  There’s something about this night that always makes me remember what Christmas is all about.  Being thankful, happy and most importantly…being with family.  As the years have gone on, the new tradition is reserving a separate room at Wildfire for the (now) 8 of us.  Now we can yell (and type!) AS LOUUUUD AS WE WANT with no one to complain about us.  We’ve even had our family Christmas picture taken there the past few years.  I realized how special this night was when catching a glimpse of the $600+ bill my parents pick up every year!  Fat. Asses.

But I think of that night as a symbol of Christmas/Chanukah/Whatever you celebrate.  Those family members that may be distant/fighting and are looking for some strength, hope and means to reconcile…. Christmas is that.  For family to gather together and remember lost loved ones - how can any of us Von’s ever forget my Grandma Von (the one that kept everything together) passing away of cancer way too early on Christmas Eve 1998.  One of the very few times I’ve ever seen my Dad shed a tear in his life…. Christmas is that.  Or giving hope to individuals in tough situations, like the one I am going through now…. Christmas is that.  To actually believing and comprehending that Jesus Christ (THE actual son of GOD) was born on this night thousands of years ago…. That’s, obviously more than anything, what Christmas is about.  That’s pretty darn crazy if you put your phone down for 2 seconds to ponder it.  This little peanut being born with fingers the size of my finger nails, Jesus Christ.   You don’t say. 

I hope I didn't offend you with these stories or vocabulary... this is just our families and inappropriate laughter is how we cope with everyday life.  It's how we survive.  But we behave when we need to and there are not more caring families in the world than ours, you really feel part of something special.  After talking with Josh, I even left off the Top 5 most vulgar holiday stories we could think of…. Some things should just be taken to our graves.  Work hard play hard, my friend.  Be happy, generous, enthusiastic and compassionate… and have fun…because it always works out in the end.

2014 Christmas Addendum 1 – This Christmas we got a special surprise as my Uncle and cousin got into the most heated argument about Jay Cutler that I think anyone could get in for a full 45 minutes (alcohol had no part in said argument).  In the middle of arguing whether the Bears should keep Cutler or not, Uncle Buck in his "why the hell are you wasting time on this" voice screams "Google It!" As in Google whether the Bears should keep Cutler.   I think Aunt Georgia and I were the only ones that heard it but I was dying laughing as "Google It" is a response us children say every day to our parents.  And this was even more heated than Scott Zoellick and my destruction of Jeff Jesernik’s “Cutler is a Top 5 Quarterback” argument that's gone on back and forth for the past couple of years.  I know Jeff, now your story changes, you were never a Cutler supporter ("from like 1.52 to almost like 2.17 years ago I haven't been"), you thought he was above average on a good day these past 2 years.   Then, why, one might ask would someone defend Cutler so passionately and vehemently if his true feelings for him are “he’s above average on a good day.” It's gotta be a lie or just a delusion.  Couldn’t you say that about every bad to average quarterback? They're  Ask my parents, Lindsay, whomever,... I was the biggest Cutler supporter (Nobody hazes our pledges but us! – Animal House).  I bought the jersey.  I bought the big-arm hype.  I bought the we haven't had a QB since Sid Luckman.  But I got to call it like I see it... when your all your turnovers are still 5 times fewer than your pouty faces and you do not command the huddle, nor are you a leader in any capacity, your backups consistently outplay you and now you're going on your 5th Offense Coordinator in 7 years,  it’s time to go Jay.  It's official, I am no longer Gay for Jay.   Just leave Kristin here in Chicago.  

(Note: I enjoy having the platform to ever-so-slightly embellish arguments to be more my sided....not that I did that here or anything)

2014 Christmas Addendum 2 – Over the years my Mother has put together quite the collection of Christmas statue houses, people, restaurants, pubs, ice rinks, coffee shops, fire and police stations, etc, and puts them all out in one Christmas Wonderland Neighborhood.  It’s really remarkable.  Here’s where it gets interesting.  My Mom tells me this Christmas Eve that she has actual dreams where she is a person in said Wonderland and is growing up, going to school, walking around Christmas caroling, eating chocolate turtles and doing 360 spins on the ice rink, all in this dreamland.  She has literal dreams about this.  That is so hilarious!  Hey, you can’t control your dreams. And its a pretty sweet city.   When all the chaos had finally calmed down, I tried to take a quiet,  few second video of her dainty Wonderland… as you’ll tell, even with only 4 of us left there, we can’t have complete silence for 10 seconds!  That was the 5th video I tried taking haha.

Lots of love, warmth and prayers to you and yours this holiday season.  Happy New Year!!

Eric

 

 

 

 

 

 

 

 

 

 

 

 

Finally a short blog post....

 

Seven Hundred Eighty-two. Five hundred twelve. A sh*t TON of donations.  Those were the final totals in terms of new Fight Like a Champion (FLAC) donors, Ice Bucket Challenge (IBC) Videos referencing my name/FLAC and the amount of money donated to the medical trust over the greatest month in ALS awareness history.   I actually physically pinched myself one time to make sure this all was real.  My “ASL” err “ALS” disease now had a brand new home and conscience in the hearts of a curious nation.   Why the hell is Jimmy Fallon’s crew dumping ice water on their heads?  Justin Freaking Timberlake is doing it?!?!? The President of the most powerful nation in the world and his two daughter’s did it too!

I went about my routine as if nothing had changed in my little bubble world.  But then it did change.  I no longer had to add the “/Lou Gehrig’s Disease” in the back of “ALS/Lou Gehrig’s Disease” and explain what the disease was, like I had to thousands of times before that.  “ALS.”  People knew.  People actually knew it was a horrible disease.  It now had a rather endearing ring to my ears instead of that old cardboard box opening sound (THAT is my nails on a chalkboard.  It also doubles as my “I can’t pack my place to move because of that noise so someone please do it for me. Oh by the way I also have ALS so someone really has to pack for me.” – I love pulling out the ALS card).

Short of JT himself being diagnosed with ALS (PLEASE take that as the humorous joke it is meant to be!), I don’t think anything could have spread more awareness than those glorious 6 weeks (we’ll call them).  Every time a new IBC tagged my name in Facebook or a new donation was made, I got the same ‘ding’ on my computer.  I tried telling Lindsay what was occurring, that seemingly every 27.85 seconds I would hear a new ‘ding,’ but a text to her did not do it justice.  During the craziest week of the IBC, Linds and I sat at home doing our normal gig at night when the computer literally just kept dinging every 5 seconds it felt like.  Every time, we would have that same half “you have got to be kidding me” grin on our faces as we turned and made slight eye contact.   The scene from Zoolander crossed my mind with each ding representing a new ticking time bomb…. “IT’S IN THE COMPUTER!!!!” 

I’m sure many of you have seen the statistics… over $120M dollars raised for ALS research in 6 weeks…. Or 20%+ MORE that was raised in the entire 2013 calendar year.   To tie a bow on this, I just want to thank each of you for your amazing videos.  Special thanks to my Aunt Anne, Uncle Dan, Coach Stilling, Schaumburg’s Football Team, Richard Price, Marty Kaplan and all of Mesirow Financial, Sarah Coleman and all of MDA for their hilarious group videos that made my month. From little kids doing it to Lindsay’s high profile associate, Dr. Nicholson, getting more water dumped on him at a higher velocity than anything I think I’ve ever seen before haha.  I will always have his facial image at the point of contact glued in my mind forever anytime I need a little pick me up smile.  And that’s what it was about.  Not the money.  It was the everyone from the smallest of children to most famous doctors, actors, athletes and musicians all coming together in a fun natured manner to have more impact on people like  me than they will ever conceptualize.

“He went to Jared”

No, I didn’t actually go to Jared, but the greatest thing in my entire life happened to me since I last checked in.  As some of you know, I got engaged to the most beautiful, smart, caring, nice, witty, compassionate, easy-going, sweet and most selfless woman I could ever ask for.   I really still can’t believe I found Lindsay and to steal a quote from….yeah…. Lou himself, I feel like “the luckiest man (man man) on the face of this earth (earth earth).   We could not be more happy and thankful for all the warm wishes.   I once told one of my best buds Steve Williams in June years back, after knowing Lindsay for a mere 4 months… I said “Steve, there’s something about her, I dunno what it is, but I really think I’m going to marry this girl someday.”  Those who know me know that was probably the least likely phrase I would utter as I entered my late 20’s after a decade of debauchery and tomfoolery.  What can I say?  It’s been about her since the day I met her and will be that way until the day I die.  I am beyond excited to call her my wife.   Special thanks to Elisha and Kevin (better known now as “Cam’s parents” haha) and Kevin’s cousin Steve (You’re the man Steve!) for all their hard work helping me find the perfect ring for Lindsay.  Also, great thanks to Maureen Flood and my family for all their hard work helping me make it the perfect weekend while I was stressed to the max about it.   And I can ensure you, there will be NO cheesy professional or amateur engagement photos posted all over Facebook.  Seriously people, get over yourselves! :)  Wedding? Fine.  Kids? I agree. 562 professional engagement photos flooding my Facebook? Come on now! Relax, I’m just joking around as I know I just offended at least half of you lol.

Health Update

Yeah. ALS sucks. Bad. The end.

I am actually happy to announce for the first time publicly that I was recently accepted into one of the most highly touted and previously-mentioned-in-my-blogs Brainstorm “NurOwn” Stem Cell trial.  I don’t want to get hopes up because this is NOT a cure (which is one reason I haven’t told really anyone including extended family).  But, this is one of (if not the most) hyped ALS trial ever to hit United States soil.  After showing some efficacy and great promise in Israel, Brainstorm finally got the FDA OK for a 48 patient trial in the US.   Thousands and thousands of applicants.  48 patients selected.  I literally won the lottery…. Albeit not as big odds as the ALS lottery I ‘won’ in June 2013 lol but a pretty damn remote lottery if I do say so myself.    Just last Monday I had a bone marrow aspiration surgery, where they extracted my own hip bone marrow.  It was definitely painful right after…. But now it’s only literally a “pain in the ass” and I’m used to those by now.  Unfortunately, mixing narcotics with my cocktail of ALS drugs was not something Dr. felt comfortable with, so no fun pain-killers, just stupid old Ibuprofen!   Then, they will cultivate my bone marrow into millions of healthy stem cells and then apply their IP technology to those stem cells.  Then, in 13 days, on November 13th, they will re-inject those stem cells into my spinal cord and with 24 shots of them into my arm muscle while we all pray that this groundbreaking trial will slow, stop or reverse some symptoms/progression.  There is also a 1/4 chance I receive placebo instead of stem cells, so another reason I am not getting my hopes TOO high.   Just roll with the punches.

There are so many people to thank and fun things going on in my life to talk about…. But I’ll check back in soon!

Happy HAlloween everyone!

Eric 

Survive and Advance - You'll have to after reading this novel!

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.

It is so well done.  He has also been an incredible advocate of my fight, and many of you saw Oregon standout Defense End Tony Washington #91 wearing my wristband during his games. That was all Ryan's doing.

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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.

Love,

Eric

Why my life is now better than yours ;)

Greetings everyone, hope your falls are going well, can’t believe the holiday rush is almost here. I wanted to send out a logistical note about our barn dance event we are having on Saturday December 7th. It’s shaping up as an awesome event and, like I’ve said, it’s great that we can raise a few dollars but I really just want to party with you all. Below are two links and you can follow either of them to purchase your ticket for the event, as well as bus transportation. I know everyone waits until the end for everything (like me), but we really need to get a head count for at least who is taking the buses so we can order the appropriate amount. As a reminder, we’ll have buses leaving from Chicago and Schaumburg (click the link for exact locations) and they are BYOB…. Think pre-party before the party before the after- party. They should be a lot of fun. If you're planning on drinking, please don’t drive home. Oh, and dress up will you? I’m thinking assless chap overalls for some of you men. The site holds 500 people so please invite anyone and everyone!

http://www.fightlikeachampion.org/A_Night_to_Fight.html
https://www.facebook.com/events/542098462541846/?ref=br_tf

These sites will eventually lead you to http://shop.fightlikeachampion.com where you can purchase your ticket via Credit Card, PayPal, or check. If you are attempting to pay via credit card - you are required to click the PayPal button, then click Place Order, which will take you to a PayPal login page. Underneath "Pay with my PayPal account" there is another link to click that says "Don't have a PayPal account?" Once you click this link, you will be able to enter your credit card info. My parents figured it out so shame on you if you can’t J. You can email info@fightlikeachampion.org if you have any questions / issues.

Now, for some thoughts, ramblings, useless info and musings on what has been going on the past couple of months.  Thanks for all your emails/messages/cards checking in, all your incredible donations, sending your best thoughts/prayers and even wishing to trade places with me.  I am still taking the Deanna’s Protocol of supplements (some 75 pills a day and at a cost of about $1,000 per month), along with 7 prescription drugs and a number of other supplements. Here is an article about Deanna’s Protocol, nobody knows for sure if/how much it works but why not try it, right? DP . My speaking has continued to slightly deteriorate, the chewing continues to slow down, I’m starting to get body cramps,  the fasciculations (twitching) have gotten worse and I have potential liver/gall bladder complications but all of my limbs continue to remain strong (insert joke here).  And most importantly, I’m in great spirits and doing well mentally.  I can assure you when you read about my last couple of months, you will only feel sorry for yourselves and, no, I don’t want to trade places with any of you :).

In late September, we had an amazing fundraiser event at Arlington Race  Track.  The event was top notch and I got to see my Aunt Carole and cousins Erin and Shelley who drove all the way from Indy just for the event. My Aunt’s brother John (I call him Uncle John) also came in from Philly just for the day.  Crazy.   Special thanks to my Aunt Kayla, my Chicago Uncles/Aunts and my immediate family for all their help setting it up.  I was feeling no pain by about 5:00 PM and we raised A LOT of money for medical expenses in part from some incredible raffle donations (Thanks Jen and Joe!) .   We also made a $1,200 donation to an ALS and Cancer patient who has limited funding for basic necessities.  If you know anyone who is in need, we are happy to give a percentage of our fundraisers to those in need as a thank you to all the amazing people in the ALS community who have helped us, yet won’t accept any gifts from us.

My family and our significant others tore up Nashville for a long weekend over my Pops’ birthday.   Darius Rucker’s “Rock me Mama like a Wagon Wheel” still plays over and over in my dreams (nightmares?).  My sister Sara definitely took home “life of the party” award.  When she gets on a roll…. I’m telling you…. this girl is hilarious

Some friends and I took a trip to D.C. for the Bears game in October.  The cops may or may not have been called after a friend’s failed attempt to light a paper “Chinese lantern” into the D.C. skies. It was supposed to beautifully glide into the star-filled D.C. night for a picture-esque moment…. Not fall straight down and light a curb-side shrub on fire.  Boys will be boys.

Had an incredible “Fight Like a Champion Night” football game fundraiser that my High School alma mater set up.  I had goose bumps the whole day/night, walking through the school and seeing everyone with my “E-Strong” shirts on.  Then, to top it off, my buddy Dan Schuman worked with Coach Mark Stilling and his wife Jami Stilling to gather up all my old teammates and surprise me on the sidelines when I came out on the field.  Hadn't seen a lot of them since I graduated high school…. It was surreal.  My Aunt Leisa and Uncle Mike took some great pictures and posted them on Facebook. Then Jami set up an awesome fundraiser event afterwards at Village Tavern, and we had a great turnout, including one of my best friends Shep who came in from New York for it.  It was one of the coolest nights of my life.  My brother and I also got to be a small part of the Schaumburg football team’s run through the playoffs…. attending the team bonfires and keeping game stats on the sidelines.  They made it all the way to the State Quarterfinals….. and a lot of those kids I’ll be keeping in touch with for the rest of my life.  Just a great group of men that made me forget about life for a while and I’ll be forever grateful to them.  We have also gotten very close with the Stilling family, and their two joyful, outgoing and adorable little girls Jaden and Melrose.  Also, a special thanks for all the raffle donations (Coach Stillings’ parents donated great Bears and Hawks tickets!), and to the great baskets of goodies that some of you Moms (and perhaps a Dad or two?) made to raffle off.  Below are a couple cool articles about the night, that some of you have seen.

http://football.dailyherald.com/article/20131024/sports/710249805/
http://footbal l.dailyherald.com/article/20131025/sports/710259562/

--Went to my 5th and 6th Bears games this year in the past two weeks.  Lindsay and I got sweet tickets in the Cadillac Club last week (thanks Stillings, Tom & Ann, and my Chi-Town Uncles!) and we were in the a skybox suite this past Sundayduring the tornado monsoon.  While everyone was blowing away in the freezing rain/wind for a 2 hour game delay, our skybox was yelling “Hey…. We need more Fat Tire Beer in here! (we were down to only 6 beer options).” I felt pretentious and pompous for the first time ever.  And I kind of liked it.  Ha.  We also got to go on the field before the game and see how short Ray Rice really is.  I’m a bitter fantasy football owner.The whole day was spectacular, way to hook it all up Lindsay and Paul from Athletico Physical Therapy!

--We officially started a clinical trial in Grand Rapids, Michigan with the renowned Dr. Gelinas and her great staff Lynn and Stacy.  I will be going every other week for the next year and praying that I’m getting the actual drug IV infusion, and not a placebo (there’s a 50/50 chance).  After considering trials at Mass. General Hospital (MGH) in Boston and others, we just felt most comfortable with this group.  Once we narrowed the trials down to 3, the drug potential for actually slowing disease progression is somewhat random in our minds (all the doctors have theories as to why their drug trial will work the best), so we went with the trial group that we could have the most laughs with….. and we are constantly volleying jokes back and forth with them.  Laughter is the best medicine. Special thanks to the Musto family for helping us through the whole clinical trial selection process (especially my MD cousin, Amanda, for her medical analysis of each trial). The Musto family's typical uplifting hilarity has really helped me through everything.

--Went to Boston to meet with Rob Goldstein and visit their ALS TDI laboratory http://www.als.net/ (a non-profit biotech company) who’s sole mission is to find a cure or disease slowing drug for ALS. Most of the scientists have a personal connection with ALS, and it was fascinating to see how high-tech their equipment was and the incredible focus and energy they have for finding a cure. We also visited another renowned ALS doctor at MGH.

--Have been able to maintain a healthy work/life balance thanks to the supportive and great people we have at Mesirow Financial.  Sleep and talking are major issues for me, so Mesirow has allowed me to work from home 3 days per week to limit my talking, as well as be flexible by starting and finishing work a little bit later than a ‘normal’ schedule each day.  Our small but demonstrative 18 person Structured Settlement department within Mesirow is one big family and the support/help I have received from them has been tremendous.  Our most senior Chicago associates (Maureen, Casey and Dan) and everyone else have really carried me through this challenging time. Mesirow Financial and, our department in particular, is a great place to work.

--Went to Lindsay’s sister Jen and her fiancé Brandon’s annual Halloween extravaganza with Lindsay’s family.  Per standard operating instructions, we stayed up until 4:00 AM singing “Backstreet’s Back, Alright” with mandatory 360 degree jumping spin moves that I have still not perfected. We went as Matthew Mcconaughey and Parker Posey from Dazed and Confused.  Ridiculous pictures to be posted soon.  Just when I wondered why I still had my fraternity paddle from college…. Bam.

--Went to the United Center for the college hoops doubleheader of Top 5 teams with my brother.  The first time in the history of College basketball that four top 5 teams met in the same building on the same night of the regular season.  Yeah, ladies, we know you think we’re awfully silly and stupid with all these sporting events.  We are.  And we love it.

--We met an awesome group of people at Northwestern’s (Les Turner) ALS Young Professional Group.  We meet once a month and all the people are (go figure) young professionals who have a family member who has ALS or passed away from ALS.  The passion these people have for fundraising and spreading awareness for ALS is incredible.   A lot of them have been supporting me and will be at our Barn Dance event.

--Given my speaking difficulties, communicative devices for the future have been our number one priority right now.  Julie (Bochantin) Schuman (Dan’s wife) – a long-time friend and speech therapist – has been instrumental in guiding us through our options and talking with speech  professionals at Northwestern to come up with a plan.  I am currently “Voice Banking” – which just entails me recording phrases/words that can be ultimately uploaded into communicative hardware to play back once I can no longer talk.  We sent out a spreadsheet to some family members to send back phrases they wanted me to record.  I would attach that list, but it is so vulgar and inappropriate that an NC-17 rating still may not do it justice.  Again, you have to have fun with this all to keep your sanity.  If you'd like me to a record a message of your choice, you can type them in here below - let's keep it PG-13 (not!). I appreciate the help - it makes the process of recording my voice a lot more interesting when I get messages from people!

The other option is uploading  40-60 hours’ worth of sentences into a synthetic voice program, which has the ability to then create a synthetic voice that is “supposed” to mimic your own and can be used to speak any words you type, not just the ones you’ve previously recorded.  The synthetic voice results vary, however, and cost between  $15K - $45K (not to mention the exhausting effort it will take for me to spend 40-60 hours talking).  We are still considering our options.

--I am currently in LA from today until Sunday for a friend’s wedding.  Time to make new dance floor friends, hopefully not bust open my too-tight pants again and cruise down the Pacific Coast blissfully searching for LC, K-Cavallari and the rest of the Laguna Beach crew, with my sweet shades hiding the occasional twinkles in my eyes.

--Bulls vs. Heat game with one of my best friends Steve Williams in a couple of weeks.  Who doesn’t love to boo Lebron?  I’ve boo’ed him in my sleep.  More than once.

So, yeah, save your time and energy feeling sorry for me.  Life. Is. Good.  And I think that about wraps up another month’s worth of “put you to sleep” material for you to divulge (who needs sleeping pills when you have clinical trials and communicative devices to digest!).   I am looking forward to seeing many of you at the Barn Dance event on December 7th, thanks to everyone involved in planning the event…. I know how much work this has been.  And for one final sappy line…. With the holidays upon us, be thankful for what you have.  Life could always be a heck of a lot worse (I tell myself that every day), please communicate to your loved ones how much they mean to you.   I would be nowhere without my incredible family and friends, and to them I am eternally thankful.   Especially my immediate family…… Mom, Dad, Sara, Josh and Lindsay – Thank you for being there for me and driving/flying with me around the country on this crazy journey none of us planned.  I love you all.

Eric

Glory Days

PLEASE COME SUPPORT SCHAUMBURG TONIGHT AS THEY PLAY AT FREMD FOR THE CONFERENCE CHAMPIONSHIP AT 7:00 PM.

I wanted to give a shout out to my High School Alma Mater, the Schaumburg Saxons Football Team as they prepare for their final few regular season games (thanks again Mom and Dad for sending us to Schaumburg High…. The Von Schaumburg joke never, ever gets old. Ever. Blasphemy). As some of you are aware, next Friday night’s home game against Palatine has been touted as “Fight Like A Champion Night,” with t-shirt, bracelet and raffle proceeds going to the medical trust fund that’s been set up for me (look at the Fundraising section for more details). I am incredibly humbled and honored to be a small part of this amazing Schaumburg football season. They are currently state ranked, undefeated and off to the best start since…… our undefeated season my Senior year. They have adopted the motto “Fight Like a Champion” for their season, and I can’t even begin to explain the gamut of emotions Lindsay and I had when we were shocked watching various news outlets picking up this story, with the influence of Coach Mark Stilling (see a couple of stories on the below links – they were actually on the front pages of each respective websites/papers). None of this would have been possible without the time consuming contributions of Coach Stilling, his awesome wife Mrs. Jami Stilling, their football staff (some of my old coaches – STEEL MILL BABY – that’s for you Coach Sloan), the Art and English departments, Student Council, SHS VIPs, SuperFans, along with so many others. I had to tell Coach Still a couple weeks ago, bro, stop worrying about this event and go watch more Barrington film. I am telling you, this ALS thing ain't bad at all. I’m living the dream attending all these awesome events. People are just so darn nice, it is incredible to see firsthand this amazing side of humanity.

http://www.csnchicago.com/preps/muscle-milk-team-week- schaumburg-saxons
http://footbal l.dailyherald.com/article/20131009/sports/710099718/

While it all starts with player of the year nominee and the Area’s leading rusher, QB Stacey Smith (dude is just plain sick), they also boast one of the state’s best offensive lines, led by 9 year Varsity starter Matt Zolper (I guess it only seems like he’s been starting for 9 years). Alex Piotrowski, Matt Stopka, Justin Sanchez and Michael Bruno round out the line while RB’s Justice Macneal-Young (The Area’s 2nd leading rusher), Ryan Tuma and Luke Gruszka are key contributors to the state’s best rushing attack. The aerial assault is manned by Bryce Carles and Tyler Watson.

The Defense is anchored by seniors Michael Fan, Ryan Woloszyk, Blake Wittkamp and Connor Lapinski. Tough group of “don’t (mess) with us” guys. The secondary is led by hard-hitting safeties Woloszyk, Eddie Kelly and Sadarriss Patterson (side note: When Schuman and I bragged to the girls about formerly starring on the “Secondary Team,” we got that look like, “oh, you weren’t even on the regular team… you were on the secondary team?!” Sigh.). These guys are knocking people around and are fun to watch.

It’s amazing how much better our old high school teams get as the years go on…. I was shocked to realize we even lost 4 games total in my 4 seasons there. In my head, It felt more like a record of 243-0. Kind of like when my Dad told me about his 3 mile suicide trek uphill both ways, in a blizzard to grade school each day. Even as a 7 year old, I comprehended the basic physics behind uphill one way, downhill the way back. Silly parents. But that’s what we all do as the years go by, disparage how tough we had it and inflate our ‘glory days,’ ala Bruce Springsteen. And that is why it has been so much fun to follow these young men building memories that they’ll brag about to their future college friends, co-workers, wives….. hell, anyone that can stand to listen to the stories (they dwindle as the years go by!). There’s not a week that goes by that I don’t remember the joyous experiences we had making a deep playoff run to the State Championship game and the incredible bond of lifetime friendships we made. It also instilled a competitive edge and leadership quality that allowed me to become a successful young professional. I refuse to lose at anything I do, I just hate it more than anything, and that all can be traced back to the attitude that sports, teamwork and winning instilled in me. And so while I am very honored and humbled to partake in this fundraising event next Friday….. I will be fine, don’t worry about me….. it is really all about supporting this team full of character, pride and leadership that never gives in. To anything. Ever. They do things the right way and our community should be proud.

I also look forward to seeing many of you next Friday. After the game, good old Village Tavern Grill (where us boys became men…. So many great memories there) will be hosting a fundraiser where 20% of everyone’s bill THE ENTIRE DAY will go to the medical trust fund. So please join us at Village Tavern after the game or pick up some lunch there earlier…. Here is a link to their restaurant website. http://village-tavern-grill.com/. You just need to show the flyer being passed around or pull up this invite on your smart phone and 20% will go to the fund. Just let the employees at VGT know when you receive your check. It's glorious that my biggest decision on Friday will be whether to order 13 or 14 famous chicken tender orders to-go. A special thanks to Village Tavern and to Mrs. Stilling, who relentlessly contacted various restaurants and set all of this up at Village Tavern. Could not have chosen a better place.

Thanks again for all your support. God bless.

Eric

 

Citizen Fundraiser - You guys rock

Greetings everyone! It’s about that time for another 24 page novel update. Since I last checked in, things have still been going comparatively well. The effort it takes to speak has gotten harder but not by much. The chewing has improved (I think – unless the brain is just that powerful). There are still no swallowing issues. The constant twitching remains an annoyance and reminder of the disease. Lack of sleep and stress are by far the two biggest symptom accelerators. I currently have an incredibly large cocktail of daily pills that would put Charlie Sheen to shame. I had another appointment with Dr. Sufit at Northwestern on Thursday September 5th. My FVC (Forced Vital Capacity – breathing test) actually increased from 97% to 99%, which was a great sign. You should see me turning blue blowing so hard into that darn machine. I am so competitive, I would much rather pass out and be rushed to the hospital than get 1% lower than I’m humanly capable of scoring (granted, the hospital is only about 17 feet away). The nose clips they use for the test have now become my potato chip bag clips. I’m hoping the reality that these clips were used on my nose will keep people out of my chip bags. Speaking of, I was told to eat eat eat…. Lots of high monounsaturated and polyunsaturated (good) fats and high fiber foods. I was told I would be losing weight from my constant body twitching (much to the jealousy of all you wishing to lose weight). So I ate. And ate. And I certainly did not lose weight. I’ve gained a couple sizes and my suits have been almost rendered useless. In fact, it’s gotten so bad, that at a recent wedding my whole fly zipper just busted right open on the dance floor. Not one of my finer moments on this Planet Earth.

Various clinical trials have been on the forefront of our minds and choosing which ones to pursue is like guessing which Kardashian is now pregnant. You just have no idea. A couple of them? All of them? At the end of last week, we went to Grand Rapids, MI for clinical trial screening for a new drug GSK has developed. Dr. Gelinas is the clinical researcher they have chosen to conduct this trial site, and she is highly renowned in the ALS community. Listening to her explain how the drug worked reminded me why I never took Chinese class. Thank god Lindsay was a molecular and cellular biology major. I passed all the long testing, poking and prodding for the trial, and we are strongly considering enrolling. The main concerns are a 1:1 placebo ratio (50% chance I get placebo), 48 week trial (lengthy) and the need to drive to 2.5 hours to Grand Rapids every 2 weeks for a 4 hour Intravenous infusion. You are free to voluntarily drop out of any trial, although it does not look good when future clinicians recruit you for their trials. We have yet to make a final decision but we liked hearing Dr. Gelinas’ general thoughts. She was amazed at how well I was still doing 6.5 months into this. She agreed with the 1 year barometer for determining the rate of disease progression, but she also gave us a new 5 year barometer to shoot for. She confirmed what we had heard, that my ‘bulbar onset’ of ALS definitely has cases (albeit rare) where the disease stays confined to ‘bulbar’ symptoms for eternity, and never spreads to the limbs and ultimate death. She said that if it hasn’t spread to the limbs in 5 years, she would opine that it likely never will spread. The criteria she gave for her rare patients that never have ALS spread to the limbs were 1. Male 2. Young 3. Physically fit/Healthy 4. Strong FVC (Breathing) scores 5. No separate cognitive impairments and 6. Mentally Strong/Good spirit/Enjoy life. 1. Check 2. Check 3. Check 4. Check 5. Debatable 6. Check.

Now, the part that I was excited to write about. We had a fundraising event Saturday September 7th in downtown Chicago. Excuse my language, but holy sh*t. I could never have anticipated the turnout we had for it. We sent out no email invites and simply posted the event on my website and Facebook and the final tally was over 250 people. From high school and college friends I haven’t seen in years, to family, neighbors, co-workers, industry friends, parents of friends, siblings of friends, golf buddies, employees from my gym (unreal), friends of friends….. it was one heck of a party and one of the coolest nights I’ve had in my life. We had people in town from Denver, Portland, New York, D.C., among others. I had no idea what to expect, but it was definitely not that. The pre-event anxiety quickly dissipated. There was only room for 130 on the rooftop so I apologize that many of you never made it up there. We all mingled on both levels, but I also apologize that I did not get to talk to many of you for the length I had hoped. Just know that I can’t tell you how much I appreciated the support; it was very humbling to say the least and overwhelming in an awesome way. The silver lining is many people I saw there I probably would never have seen again for the rest of my life if it wasn’t for this diagnosis. I’m keeping the glass half full.

Please keep checking the website for more wild parties fundraising events we will be having in the future. The goal, first and foremost, is to have a great time and keep the costs low; but also to raise some money in the interim. We have a Barn Dance fundraiser on December 7th that is still in the works…. From what I know so far, it sounds like it is going to be an absolute blast, so I encourage you all to come (we are looking into providing transportation options there and back). There is a psychologically uplifting element every time I have fun with you all, so come for that if nothing else.

Remember to live well, love hard and laugh often. Life is waaaay too short to be unhappy.

Love,
Eric

The "Eric Sees the World" Fund

On Wednesday July 24th, I met with Northwestern’s esteemed Dr. Robert Sufit. He was a perfect combination of hilarity and brilliance. At times, I thought I was listening to the latest inappropriate story from one of my uncles. There was a lot of laughter that afternoon and he spent almost 2.5 hours with us (crazy). I did receive a Forced Vital Capacity (FVC) test, which measures my breathing capacity and is another key sign of disease progression. I scored a 97% so that was another good sign. He communicated his own positive interpretation of my EMG test from Mayo. Dr. Sufit was neutral on clinical trials and off-label drugs at this stage of the disease. Instead, he recommended me coming back sooner than normal (1.5 months) to track disease progression and then reassess his opinion. He did say that if the symptoms don’t progress much by March (one year post-first symptom), he would opine that it likely may be one of the rare, slower progressing versions of ALS. No one knows how slow, but I’m just hopin’ and a’prayin! Is it March yet? I’ll know its March once my Illini basketball are no longer playing. The symptoms continue to vary, some days are good, some days are bad. The past few days have been a struggle but life goes on. People seem to enjoy that I can’t talk as much anymore. Who would have thought? The limb strength is still perfectly strong, much to the chagrin of those witnessing Lindsay and my dance performance at Elizabeth’s Door County wedding two Saturdays ago. There was definitely no limb weakness in that catastrophe.

As for the Medical Fund, I cannot THANK YOU all enough for the generous, gracious and downright RIDICULOUS donations. From the $5 donations all the way up, every dollar has tremendously helped and is so much appreciated. Had I known, I would have pushed for this disease years ago. Kidding. As there are a number of cool fundraising events my family and friends have in the works, I thought I’d give some insight into where/how these funds are being spent (it’s not all going to the “Eric Sees The World” fund).

First, I still have HMO and thus my Insurance has paid for nothing thus far. We chose to go outside network to get the best care possible at University of Michigan, Mayo Clinic and Northwestern University. Not exactly medical care off of the Dollar Menu. My monthly prescription co-pays and OTC drugs have drastically risen. I should have a PPO secured by January, giving me more flexibility, however many items still aren’t covered and there is a large deductible. The next major expense will be the use of off-label drugs, when we deem it necessary. There are a number of drugs out there that have measurably slowed progression in a fair amount of people. The problem is the FDA takes forever to approve anything, and these treatments are still in the Clinical Trial phases. if I were to go into a clinical trial, there will likely be a 25%-50% chance (depending on the trial) that I would get a placebo pill and not even know it until the end of the trial (sometimes these last a year or longer). Given the average life expectancy of someone with ALS is 3-5 years, we do not want to take the placebo risk associated with these clinical trials. Instead, you can buy some of the drugs (or slight "variations" of the drugs) off-label even before the clinical trials have ended (yes, it is more risky, and those will be tough decisions). One drug we are looking at now costs $20,000 to 60,000 per year (depending on dosage decided), which will obviously all be out of pocket.

Lastly, should the disease ultimately progress, there will be a number of “luxury” items insurance won’t cover that would make my life so much better. For example, former NFL player, Steve Gleason, has technology to write and communicate with only his eyes. He has written football columns and also maintains his own twitter account. Truly remarkable. But who knows? The past 5 years have been so promising and the ALS community has had some HUGE stem cell breakthroughs in the past 2 years - maybe it will never come that. Either way, all of your fundraising help throughout the years will better prepare me for expensive experimental drugs and purchasing equipment that will increase my quality of life. If the researchers do eventually find some cure to ALS in my lifetime, any remaining money in my medical trust fund will go towards one of the amazing ALS organizations out there.

Thank you all again for all of your love, support and willingness to help with anything and everything (and for reading these incredibly long updates - I swear I start off thinking it will be one paragraph). You guys are the best! Looking forward to seeing everyone soon. Oh, and go hug someone close in your life right now and tell them you love them. Do it! What are you waiting for?

Eric

I have ALS?? What the $%&# is ALS?

As some of you know, I spent this past week at Mayo Clinic to obtain further testing, consultation and treatment for my ALS diagnosis.  This morning, I met with one of Mayo Clinic’s most esteemed ALS physicians for a lengthy evaluation and discussion (Dr. Eric Sorenson – also a U of I graduate – who knew there were smart ones) .  The guy was phenomenal on all levels.  My EMG test came back very good; with the exception being abnormal nerve readings from my tongue, which was expected given my symptoms.  My limb strength and limb nerve readings remain strong, although he did note some potential precursors on my extremities.  But, right now the symptoms are completely confined to “Bulbar Palsy” (speaking, chewing, swallowing difficulties….although I have yet to experience the swallowing challenges).  He said more than likely it will eventually spread throughout my body, but he’s seen cases where it stays in the bulbar form for 10, 20, 30 years or even bulbar cases where it never spreads, and you die from other causes.  The more normal trajectory is far less years, but we are not normal.  There is no real rhyme or reason to progression; it’s amazing how little they know about this disease.  He said the one year post-first symptom mark is an important milestone as the rate of progression won’t change much (good or bad) after that.
 
He did note a statistically proven correlation between age and rate of progression (the younger you are, the slower it generally progresses).  The cases that don’t spread for many years/decades are often in young people, with bulbar onset.  Bulbar onset is the ALS version you seemingly want to have as there are cases where the disease will stay as only bulbar onset and not spread to the limbs for decades (I feel so ‘lucky!’).  Bulbar onset is sometimes referred to as "top down onset" starting with the dysarthria (slurred speech), and limb onset is referred to as "bottom up onset" beginning with limb weakness in the feet or arms.  Many patients do not receive an ALS diagnosis for years, but I have caught it early and started a couple drugs, which have varying results but can’t hurt.
 
Dr. Sorenson did say that with my symptoms so confined and comparatively mild, coupled with the good EMG results, I would likely be excluded from interventional clinical trials at this point.  He said that could very well change in just a couple months, so it is kind of a double edged sword.  I’ve never been happier to be excluded from the club.  He said the biggest symptom accelerator of this disease is fatigue, so I will be getting plenty of rest. I could get used to this.
 
All in all, it was a very mentally and emotionally uplifting visit to Mayo.  They really know how to treat patients.  As far as symptoms, the speech and chewing remain difficult but manageable after a good night of sleep.  The cloudy headaches after a few minutes of force-speaking remain a challenge.  I am still going to Northwestern next week for a multi- disciplinary consultation and then Dr. Sorenson would like to see me in 3 months.  Given our great experience, we are considering doing ongoing treatment at Mayo as it's typically only a few days every 3 months, depending on the progression.   We will continue to keep you updated.
 
Lastly, I cannot thank you all enough for the outpouring of love, support and inspiration I have received.  Seriously, you guys are freaking unreal. UNREAL. I am truly blessed to have the greatest parents, brother, sister, family, friends and most amazing girlfriend ever (she is adorable!).  It is remarkable what a diagnosis like this will do to your outlook on life.  I am no longer preoccupied with the petty stress elevators like being late, arguing with my brother or complaining when I’m dragged out for shopping.  Just go out and enjoy life…. It is a beautiful thing.
 
Love,
Eric