THE VON SCHAUMBURG FAMILY WOULD LIKE TO REMIND EVERYONE OF THE BARN DANCE FUNDRAISER TAKING PLACE THIS SATURDAY, AUGUST 9TH. WE THANK YOU ALL FOR THE AMAZING AUCTION DONATIONS AND LOOK FORWARD TO SEEING ALL OF YOU THERE! ALSO, THIS YEAR, YOU CAN BID ON AUCTION ITEMS VIA MOBILE DEVICES, SO YOU DON’T NEED TO BE THERE TO BID!
- FOR MORE INFORMATION ON THE EVENT, CLICK HERE
- TO PURCHASE YOUR TICKETS NOW, CLICK HERE
- TO SIGN UP FOR THE SILENT AUCTION AND BID ON ITEMS (IF YOU ARE NOT ATTENDING THE EVENT), CLICK HERE
Also, this will be the last novel that I write. I’m switching to shorter monthly updates (thank god for all including me). Tough to remember everyone/everything in that you’ve done in the past 6 months without writing these chapters that would make John Grisham jealous. And even then knowing you still forgot half of the stuff people have done for you.
8/12/2014 - Like everyone else, I was recently stunned and saddened at the passing of the beloved comic Robin Williams. So many great movies I remember growing up, from Good Will Hunting to Mrs. Doubtfire to Patch Adams and so many others. Just four days before his suicide, I made a light-hearted jab at Robin in my below blog. I was obviously unaware of his depression and tough times he had been going through. I just wanted to take this moment to honor Robin's incredible life and may he Rest In Peace.
8/8/2014
Hello, Newman:
I hope the crew is all doing well enjoying bathing suit time (even though we probably don’t enjoy YOU in a bathing suit!). In honor of Jimmy Fallon taking over for Big Chin, I’ve decided to make a Pro/Con list of having ALS. (Side story: My mom and I waited hours to get into the Leno Tonight Show about 15 years ago… the B list actor was a little known man named “Will Farrell.” We left thinking dang this dude was funny. That was also the trip I went to a Britney Spears concert. Aaaaand that trip story ends now).
Con: I can no longer breathe as well as before Pro: Lindsay literally takes my breathe away now
Con: I occasionally choke on food/liquids
Pro: Golf is now not the only thing I choke on (Pana withstanding #KKC)
Con: I have difficulties swallowing things like food Pro: No one around me has that same problem
Con: My Mom literally treats me like a 3 yr old baby Pro: “What baby wants…. Baby gets.”
Con: I can’t yell at bad taxi, DMV, dining service, etc
Pro: First year I haven't been in a fight in 20 years :)
Con: I can no longer talk on the phone with my friends Pro: I’ve been brainstorming how to accomplish this for 10 years
Con: I require 10 hours of sleep and a BMI of 31 Pro: I require 10 hours of sleep and a BMI of 31
Con: I give grocery store employees notes to help me Pro: You can’t imagine how much more helpful employees are, try it! You would sicko. Then walk back to your fake handicap parking spot sign
Con: I sometimes move food around with a finger in my mouth to eat Pro: I always wanted to eat like my friend Jeff – Oh damn he went there!
Con: My Mom actually had to buy me saliva handkerchiefs like I’m 80 Pro: My dream of growing old with Lindsay has finally come true!
Con: It’s morbidly difficult faking all these ALS symptoms
Pro: I got y'all suckers fooled....thanks for the free shit!
Section 1 – Health Update
Not a whole lot to update on my actual health. Still progressing at the same way-too-fast-for-my-liking speed. But yet, in the ALS world, I’m progressing extremely slowly. Not one fine motor weakness in my whole body below my chin. Talking is toast for me unless I’m in a very quiet location with people I know well. For the first time in public at Randolph Street Festival, I busted out my voice amplifier/head phone set that has me rising up the charts as DJ Fanny Pack. Seriously. I’m 31. I wear a fanny pack. WTF. Once the friends’ jokes dissipated, it actually did allow me to strain less and still be somewhat audible (pre-5-sangrias...then all bets are off). I have a very small list of immediate family/friends that know enough about my day to day health/activities that need to join me for any lunch/dinner/meeting. I just can’t get by on my own. I hate silence! My jokes suck now (I know, you’re thinking… NOW????). It usually starts with “what?” then “what?” Again. Followed by a “sorry dude?” when I get so frustrated I write down my witty remark, which goes from Paul Rudd funny to, I dunno, post-Mrs.-Doubtfire-Robin-Williams-funny. I’d say swallowing has been the major accelerated symptom since my last blog. I can’t swallow my pills in the middle of the night (“In the middle of the night [middle of the night]… I go walking in my sleep [walking in my sleep]” – Billy Joel!) as the muscles slow down when I’m tired and I’m gagging/gargling trying to get the pills down… I can’t imagine the lucid dreams Lindsay has haha. Ironically, food has been much easier to eat (after I cut it up into slightly smaller pieces) and I was baffled by that. Dr. Brown at UMass indicated it was because liquid has less consistency than food so it can go down the wrong ‘pipe’ a lot easier (aspiration). I was no longer baffled.
As for updates on doctor visits/clinical trials/symptom relief appointments, here we go: With my clinical trial wrapping up there are still no efficacy reports from GSK on the trial drug to date other than “we see enough to not cancel the trial.” Whatever that means. Thanks for the earth-shattering report! We have been visiting clinics across the country to see which clinical trial may now make the best sense (if any), since most eligibility requirements are a maximum 2 years from post-first symptom (i.e. time keeps on slippiiiing…..into the fuuuuture). A lil Steve Miller band for ya old folk. On a serious note, it is amazing how much faster father time has ticked since my diagnosed…. When all I want is for it is to halt on a dime, hell, you can even Benjamin Buttons my ass and I’d be thrilled.
Since my last battle update, I visited Mayo Clinic again to look into some promising clinical trials there. It did not go as well as the doctor indicated, he’s still not diagnosing me with ALS because it hasn’t spread to my limbs, he’s only diagnosing me with Bulbar Palsy, which is only an impairment/slew of symptoms, but NOT even a the name of a specific disease itself. “Bulbar Palsy is an assortment of signs and symptoms, not the name of a precise disease.” (http://en.wikipedia.org/wiki/Bulbar_palsy). So even though I have every other symptom of ALS (Bulbar onset, not being able to talk, twitching (fasciculations) all over my body, breathing issues, constant cramps all over, hypersensitive reflexes, chewing and swallowing issues), to them, I don't have ALS. Every other doctor/clinic I’ve seen this past year (I *think* we’re at like 8 or 9) has said no doubt ALS diagnosis after looking at my EMG combined with all the other symptoms. But it got even better at Mayo (facetiously). The doctor at Mayo claims that I’m still 17 months post-first ALS symptom, even though he says I don’t have ALS. Figure that one out? So according to that logic, I would not be eligible for most Mayo trials if it doesn’t spread to my limbs by next March – something really great to hope for (because I’ll be 2 years post-first ALS symptom, even though I apparently don’t have ALS!!!). All doctors and trials are different though so I am still holding out hope at Mayo for future. These illogical assessments are what make people move to illegal, underground treatments and swear off all doctors (see: Dallas Buyer’s Club – and go watch it, great movie about our trial frustrations). Thankfully, there’s a whole slew of AWESOME and AMAZING ALS doctors and clinics so I don’t have to go that route!
We have now shifted our attention to the Northeast (centering on Boston), which is literally a hotbed of wicked cool ALS clinical trials, different treatments, research, etc. While there is plenty of research going on at Northwestern and the other Chicago Clinics (UIC and U of C), there’s not a whole lot in terms of actual clinical trials (note: Please work on that Dr. Sufit!! :) ). We were fortunate enough to see Dr. Robert Brown and Dr. Merit Cudkowicz at UMass and MGH, respectively, in Boston a few months ago. There are a number of promising trials, with most requiring you live within a 2-3 hours radius of the hospital, in case there are side effects and you need to get to the clinical trial doctor ASAP! Plus, it’s a lot easier to keep track of progression post-trial if the patient lives nearby. So my family and I are considering renting a place in Boston and moving there if we want to participate in any of their clinical trials. We will do literally anything we have to do to pursue a progression slowing drug. Plus our family is all best friends anyway, it’s like I’m hanging with all my high school buddies, I have to stop my Dad from his comments… I thought it was supposed to be the other way around?!?! Also, our good buddy Rob Goldstein (One of the Rolls-Royce of ALS-TDI www.als.com) and TDI are out in Boston. We were able to catch up with Rob in Boston. So knowledgeable and just a good, awesome guy in general. I feel like he’s my older brother always busting on me, smacking me around…. man sorry Josh for all the times I made fun of you growing up… and still do. It’s a shame you can kick my ass now (ehhh older brothers have random strength boosts when fighting younger brothers).
Everyone wants to know about stem cells, stem cells, stem cells, Brainstrom, Brainstorm, Brainstorm trial. While it could be the wave of the future, there are so many variables and potential side effects; this is certainly nowhere near close to perfected. It is Brainstorm’s first trial in the US and while they are looking for efficacy along with safety. There’s only 48 total applicants nationwide (16 at Mayo, MGH and UMass), and they want most limb-onset patients, though they need to make it diverse or their results will be scrutinized so there will probably be some bulbar onset patients in there too. It also seems that frequent, reoccurring injections would be necessary, and there’s nowhere near the funding to have repeated surgery on thousands of patients every few months. That low number of patients in the trial is normal for an initial FDA-approved trial in the U.S. God forbid they did a 300 person trial, killed 2 people, then even if it showed efficacy (and they had to tinker with what happened with the 2 people), it would be shut down likely for good and immediately. This is unfortunately how the clinical trial process works, and obviously safety is also a concern we have to look at because I’m still loving life.
Section 2 – Cool Stuff
We have come across some really cool new things/learnings/travels since the last time I checked in…. gosh I guess it’s been since February.
{C}{C}{C}1) ALS doctors have manufactured a way to take your skin graft, turn those cells into motor neurons, put them in a petri-dish and then try an infinite number of drugs/treatments on your actual motor neurons to see which ones increase and slow down nerve degeneration. Up to this point, we had been relying on mice for the most part. The mice trials took roughly 8 years of experimenting, and some of the most promising trials in mice turned up as busts in humans. Now it’s like you’ll be putting all these potentially risky drugs in your own body without the adverse side effects. The best doctors in the country think this this is the wave of the future and mice trials will be obsolete in 10 years.
{C}{C}{C}2) In April, my family was featured at the 8th annual MDA “A Toast To Life” fundraiser. It was so wonderfully set up, a special thanks to Sarah Coleman, Amanda, Frank The Tank and everyone at MDA for the whole production of my family (see below). It was so awesome. Shout out to my long-time boy Seanny Moran for a tear-jerking introduction of me. It meant more than Sean will ever know. Also, check out my Dad's speech... he is one of the best writers I know. That could have been his life calling. Awesome.
https://www.youtube.com/watch?v=eQXWe3REdDg&list=UUmHLqU6ql3jbSoU-vIfh_RA
https://www.dropbox.com/s/9hutfqa8cmh0saq/The%20Von%20Schaumburgs.mp4
3) As some of you may have seen on Facebook, we have been given a new communicative device prototype by Mark Parker of TREWGrip www.trewgrip.com . Mark has been an innovator his whole life and, even though he’s jealous Brian Kelly took ND and not his Cincinnati team to the Title Game; we think he hit a home run here. The TREWGrip is an upside down keyboard where your fingers are underneath a docking station (picture). You then dock your phone magnetically to a docking station (and connected through Bluetooth). The TREWGrip also acts as a gyroscope (not a gynescope you pervs), allowing you to move the mouse with your TREWGrip movement. So, I walk down the street, I type into the Speech Assistant AAC app (HIGHLY recommended for Android users of the AAC Market https://play.google.com/store/apps/details?id=nl.asoft.speechassistant&hl=en) and audio output for the synthetic voice my brother and I created now comes out of the Bluetooth speaker I wear around my neck or place on a table for others to here. While the original use was for business men ‘on the go’ Josh saw it on a tech blog, reached out to Mark, and we are now spreading the word about it across the AAC market.
4) We got to surprise one of my best friends Steve Williams in Las Vegas for the Super Bowl on his 30th birthday weekend. His fiancé Gina set it all up (and I even got fake mad at him because he cancelled on my fake Super Bowl party invite to him), and I’ll never forget his face walking on the party bus seeing all of his family and some friends there. Sam… er…. Steve (most of us friends don’t even remember our first names) is just one of the greatest people you’ll ever meet. We’ve been through a lot together and he will always be the closest of close. My lasting image of Williams is him waking up first at 7 AM in college on Illini football game days (Yes, we have a team), beer in hand walking around yelling and pounding his feet on the ground screaming the Chief Illinwek song (Do do dooo do; do do dooo do; DUHDUH DANANANA DUNDUN DANANANA CHIEF (footpound) CHIEF (footpound)” to wake the other 8 of us living in that hell hole. He was so loud you wanted to jack him, but he always had a nice cold beer or bloody Mary and eggs for ya to cure that 4 AM hangover from the night before. 3 hours of drunken sleep and we're right back at it for a 14 hour bender. HOW DID WE SURVIVE COLLEGE?!?!
5) I visited one of my other best friends Shep in NY for a H-word game (I still can’t say that word….too soon even 2+ months later) at Madison Square Garden. We had a blast as we always do, but a week later we had a great talk (hahaha ‘talk.’ I can’t talk. Silly guy I am.) about more serious things, other than what girl he was currently “dating” that night. If only “dating” was the word I wanted to say. Anyway, we chatted and he decided to change up his life and take some action to becoming a better person. We are 30+ years old now and he realized he wanted to contribute to society in a more meaningful way (or I helped him realize that he wanted to… whatever way you want to slice it haha). He stepped up and became a captain for the ALS NY walk, without knowing anyone. He went to the meetings (side note: he said one of the biggest reasons he went was to see what ‘the field’ looked like… honesty has always been a quality of Shep… sometimes too much of a quality haha). He gathered up a team of strangers and raised some good money for ALS. Bottom line, he has been stepping up and I am proud of him for it. We have also gotten a slew of donations from Shep's co-workers in NY, obviously none of them I have met. And they were significant donations too, I can't thank you all enough!
{C}{C}{C}6) As some of you know, I was chosen as the one national ALS representative to appear on the (formerly Jerry Lewis) MDA telethon. A month or so ago Lindsay and I were filmed from going to an MDA Clinic to walking to my office (got a lot of looks with the film crew circling me, like I was Blago, on my walk down State Street), to Eataly on a ‘date’ with Lindsay, picking out fancy wines and foods. Paparazzi/Onlookers were following us with the 10 person film crew and everyone around wanted to know who the celebrities were. They were taking pictures/videos. Naturally, Linds and I were waving to people as we passed them, like the real celebrities we are. My Mom played it off great yelling “OH MY GOD – ITS THEM!!” as she snapped away at pics haha. It was a lot of fun. I think we racked up a more than a grand for lunch with the awesome crew :). Then we did more filming and group shots at other locations and its coming together nicely. It will be aired on ABC August 31st at 8 PM Central time. All that filming, picture/video gathering for like a 3 min segment…. They are definitely professionals out there! The video turned out phenomenal. Check out the ad for it….
Section 3 - The Birthday Month To Remember
{C}{C}{C}1. Wow, the month leading up to my birthday was no doubt the best month of my life (I seem to say that often!). It started off with a weekend of fun in Boston with the fam after my doc appts Thurs/Fri, with a little help planning from my guy and new co-worker Jason Weinstein. But I noticed something right away. My always-the-life-of-the-party sister was just not herself. Not drinking, feeling crappy. I immediately knew something was up and said MOM, SARA IS PREGNEANT! I know it! Sara couldn’t hold the secret any longer and, even though Mario was not there to announce it with her, we learned at dinner that Sara was pregnant and I’m going to be an Uncle for the first time (that I know of….. Josh?)!!! I am so happy for them and can’t wait to spoil the little booger. Between my ALS and Sara’s pregnancy, a typical rowdy drunken Sara/Eric hangout (sometimes turned sappy cry-fest by the end of the night) turned into a much more mellow one, which, as the years go by and the symptoms get worse, I much more enjoy those nights anyway. I just enjoy life period. CONGRATS to you two! I am so excited for you! I heard the middle name might be “Von.” Wow, that would be the coolest thing ever.
2. Then the MDA filming next week – awesome. Special thanks to Sarah Coleman, Alicia Santeralli, and the awesome film crew, Tom Schrantz, Jim Rink, David Vaughan and so many more that were in the crew.
{C}{C}{C}3. Finally, after all this wait, we took our trip to SF and Pebble Beach! Holy hell it was the coolest trip ever. You forget you’re playing golf and just look at all the crazy cliffs, views and scenery… then you remember you’re actually physically hitting a golf ball in it! After a doc appt in SF, we headed down and played Spanish Bay Friday, Spy Glass Saturday and topped it off with Pebble Beach on Sunday. My Dads prediction for 6 months “I’m going to get all choked up on the 18th tee box, and duck hook it into the Pacific.” Well, he was on fire that day, played an incredible round. There would be no duck hooking this time around, that driver was straight as an arrow all day. Man he was on fire. But oh no, wait, we both got choked up on the 18th tee box and the dude actually duck hooks it into the Pacific!! Couldn’t have made up that story it was so funny. We were laughing so hard we were in tears. Pictures are posted now. Special thanks to the love of my life, Lindsay, for setting all this up as a Christmas Present!!! Is there any doubt she’s a keeper? What a woman. Unreal. I love you so much Linds, you are my rock, my everything.
When it couldn't get any better, I got two more cool stories about Pebble
1) One of my Dad’s best friends (all the way from childhood), Pat Carroll, reached out to the famous golfer Tom Watson’s caddies’ foundation (The Bruce Edwards Foundation http://www.bruceedwardsfoundation.org ). Bruce skipped college in 1973 and became best friends and the caddy for Tom Watson during his illustrious 8 major-winning, 30 year run (with a 2 year hiatus to work with an Aussie known simply as “The Shark”). In 2003, Bruce was tragically diagnosed with ALS and continued to work for Tom all the way until his quick death in 2004 (another example of how F-d up this disease is and how lucky I am that I have a slow progression). The book and subsequent TV special “A Caddy For Life” is a tear jerker and recommended for anyone and everyone, as it is far from a Golf story (http://www.amazon.com/Caddy-Life-Bruce-Edwards-Story/dp/0316010863) . My Dad had read it 10 years ago and cried his eyes out, funny how life comes full circle. I digress, but anyways, I show up to Pebble and there was a personalized letter to me from Tom Watson, not your standard famous-person two sentences (which I would have gladly taken!), but a fairly long letter along with a personal message to me about Pebble, ALS and Bruce. It was so incredibly cool, here’s a picture of it. I was so inspired that I shot 21 bunker shots on 18 Pebble Beach holes on Sunday lol we all have our limitations. How did I forget my sandals?
https://drive.google.com/file/d/0B1DoLnan2uvNWnU0RUhtaXJVMnBvOUNvLUI3MnJGZWJyc0lZ/edit?usp=sharing
2) After playing SpyGlass on Saturday, we got some dinner at Pebble’s main restaurant and were hanging out afterwards looking at the trophies, etc. This tall dude walks by to the bathroom, I don’t see him, but Lindsay whispers to us all “I think that might be Peyton Manning.” Not gonna lie, Linds, I had my doubts. This was the same Lindsay that (after a White Sox game) we went down near the field and there was this gigantic, ripped black man along with two tiny, smaller-than-me white dudes doing the Comcast post-game show. I say “Oh damn there’s Frank Thomas! Awesome!” Her response “wait, which one?” Like I said, I had my doubts. So After a few minutes in the bathroom, he still hadn’t come out and I declared “I’M GOING IN!!” in my best Bruce Willis voice (more like R2D2 but who’s counting) and followed him into the bathroom. Sure enough, it’s Peyton Manning….. just Peyton and me, Me and Peyton, hanging out at the urinals…. I’m like what do I do? Do I take a peak? I mean its Peyton Freaking Manning here. I thought otherwise and we headed to the sink…. My voice was fading, I was nervous as hell and 10,000 things crossed my mind to say, including: 1. Thank you for all your incredible charity work off the field, you are an inspiration to me. 2. Thank you for being Peyton Freaking Manning…. still best commercial ever “If you like 6’5 230 pound quarterbacks with laser rocket arms…” https://www.youtube.com/watch?v=2G0loI0Jn5M or 3. Thank you for choking all those years in pretty much every single big playoff/Super Bowl game (my Mom could beat Sexy Rexy in the '06 Super Bowl) so my argument that Brady will always be the more clutch, have more rings and do it with a less supporting cast; and thus the better quarterback, still holds true (right Schu Froggy Dog? “Don’t tell me what you did; tell me when you did it!”). I love Peyton to death, but you picked Brady or Manning 10-15 years ago and you gotta stick with it, and I’m so glad I picked the right one. So, anyway, I’m about to say something really cool, really BIG, bring up my ALS, see if we can get some autographs for it…. And then all that comes out was a high pitched mumble “Hey.” Peyton actually mumbled “Hey” back to me and then left the bathroom. I ran out after him jumping around saying “It was him! It was him! It was Peyton!!” Of course all anyone wanted to know was, “How Big?!” I’m like you girls are gross, what kind of a sick pervert would do that (Not mentioning that it actually crossed my mind for about 1/1000 of a second hahaha). Peyton Pic
4. Two awesome concerts – Zac Brown Band at Summer Fest and Dave at Northerly Island on the 3rd and the 5th. Great times with the fam, Stillings and Bennifer!
5. Then on 4th of July, three ALS patients and myself were honored on the White Sox field for the 75th Anniversary of Lou Gehrig’s famous last speech at Yankees Stadium. I got to go on the field beforehand, meet with future MVP Jose Abreu (I knew Frey was so drunk when he even considered proposing the question Rizzo or Abreu… get real), hug and shake hands with him and also receive an autographed ball from him. Abreu Pic Abreu Video World Series Pic It was such an awesome, surreal day. Anyone that knows my White Sox love knows how much that meant to me. USA Today also did a cool story about the 75th anniversary and included me in a lot of it.
http://www.usatoday.com/story/sports/mlb/2014/07/04/lou-gehrig-als-research/12220369/
6. I topped it off with my birthday on July 6th. I got some awesome cards (thanks Jordan!!!!), inspirational notes and gifts, thanks everyone!! And I am checking another thing off the bucket list – Sky Diving. Thanks Linds! As my Dad has said (and then keeps saying and saying until you’re just like… it’s not funny anymore – typical Von Schaumburg overuse of a joke), “Eric’s going to need another bucket pretty soon for everything he’s done!” hahaha haha ha haha ha... bust.
7. Just got back from an awesome annual golf trip with my HS friends known simply as PANA. Either you know it or you don’t, and nothing I ever write could ever do it justice. We already have a 358 day countdown till next year. I skipped last year (thought I’d be dead in like 27 days haha) and initially turned it down this year because of how crazy wild it is, but changed my mind and they accommodated me even though they had found a replacement. It turned out awesome and gave me a lot of hope I can still have crazy times with my friends, even if I don’t drink as much or can’t talk well. Thanks to all the guys for being patient with the extra time it takes me to do anything, including waking up and writing out notes instead of talking. It was just what the doctor ordered (definitely metaphorically speaking haha).
https://drive.google.com/file/d/0B1DoLnan2uvNNkZkdDg5Z1VEd2c/edit?usp=sharing
INSPIRATION
Usually at the end of my novels blogs I try to impart some inspiration on you all. Usually some theme that I have been in deep thought about for some time about what little thing you can incorporate in your life to make you a better person. Well, this time, I thought I would tell you about some moments that have inspired me lately. There are so many to count that I’m just randomly choosing some here because my publishing company is telling me to hurry the $&#$ up. There’s so many more I need to pay tribute to, I know.
{C}{C}{C}1) I would be remised if I didn't specifically thank 3 families near and dear to my heart…..all friends of mine from a very early age and all of their families became very close with mine growing up. The Schuman’s, Jesernik’s and Frey's. These 3 families have basically been there for every fundraiser (big or small), taken care of every need I’ve had and are just the 3 best and longest-tenured family friends we have. At the horse race fundraiser, I think Mr. Frey would have bid whatever it took for that Bears jersey/ticket package (a couple beers in Mr. Frey is always a good thing for auction bidding!!). I think he bid $5,000 and the next bid was like $1,000. I love that dude ha. Jeff and the rest of his family have also been so supportive, with Jeff making appearances everywhere for me. And he better, since I just beat his ass in golf :)! The Schuman’s have also been to literally everything and then donated money for ticket prices for events they couldn’t attend. So crazy and generous. Julie Schuman has also taken on a special roll of accompanying us to our speech therapist meetings and researching communicative devices for us, as she is a Speech Therapist. While not an original “Schuman” she has certainly fit right in with their tremendous generosity. Dan and Julie have been incredible advocates of mine, and we had a blast with them singing “Piano Man” at Wrigley a few weeks ago. I can’t thank you 3 families enough for sticking by me during this challenging time.
{C}{C}{C}2) One of the girls in our high school ‘group,’ Casey Starkey (incredible athlete), went to college in Wisconsin, got married, moved to Indiana, had kids and I think everyone in Schaumburg was like “uhhh what the hell happened to Casey Starkey…VanPutten….whatever her name is now?!?!” So she watched a video about my story, reached out and even had her awesome Father (whom I remember well) hook us up with some auction items! One quick side story I have to write (some people know this)…. I was hanging over at Casey’s Frosh year of High School, and she had this cute little dog. So, she calls for her dog “Come here (no response)…. Or Not). Well, I thought the name of the dog was actually “Ornot.” Thought, ok that’s a little strange but I was trying to be suave, so there I am, the rest of the night calling for her dog Ornot. “Come here Ornot…. You little cutie. Come on Ornot, over here! Come let me pet you Ornot!” Casey was outside, her parents were looking at me like I was some wackjob (good instincts). Finally Casey was like what the heck are you saying?!?! So yeah, that turned out to be a story that spread like wildfire across our group…. Along with in 8th grade me ordering an English sounding “Ca – Jon” chicken sandwich instead of a french Cajun chicken sammy. Or my 5 AM argument with a Los Vegas McDonalds cashier …. I don’t remember all the details (5 AM in Vegas on my 21st birthday) but I do remember thinking, I’m gonna show her! Somehow that ended with me buying 30 sausage egg McMuffins, 30 Bacon Egg sandwiches and 30 hashbrowns for the 5 of us in our hotel room. I definitely showed her. Idiot. ORNOT, the best dog in the world.
Anyways first off, Casey shared with me some of the struggles she has gone through in the past 10 years and I get hopeful and inspired every time I hear what adversity people can overcome. Secondly, she has two adorable kids. One of them, Kinley, is old enough where Casey watched a video on me and told Kinley “we have to pray for my friend Eric at night.” So they did that night and the next night Kinley said “And don’t forget to pray for your friend Eric”. And then she did it more nights as well. The girl is just adorable. So Casey goes into a Parent/Teacher conference and guess who Kinley had brought up multiple times? Me. Apparently she was confused why her teachers and fellow classmates didn’t know who “Eric” was and why they weren’t praying for him haha. It was such a cute story. Then to top it off, Kinley donated her life savings from her lemonade stand to my Trust, and dropped off an awesome picture she made for me! I love kids! From Kinley to Jaden and Mellie to Anna and Emma to so many others – they are so fun to chase around. Those stories are exactly why I keep fighting and know things will be ok. Oh, and check this picture out…. Thanks Kinley! Your prayers are working! Kinley
{C}{C}{C}3) One of my brother’s best friends (and one that I consider a good friend of mine – He helped make the Blackhawks summer of 2010 one of the bests of my life), recently lost his father tragically and unexpectedly. His Dad was just like my Dad. Unbelievable guy, so personable, funny, smart. My heart just ached for a long time thinking about his suffering. It made me put my life in perspective – I have the ability to (if it comes down to it), say goodbye to everyone, do everything I want to do, etc. I will also always have my mind, and thus the ability to inspire and be a productive/contributory member of society. I've always said I’d rather suffer through this horrible paralyzing disease than have life ended suddenly. Yet, this friend had his father robbed from him. Life just sucks sometimes, that’s all I can say. But watching this man step up and take care of his Mom and younger sisters, be the new man of the household, has inspired me in a way that he will never know. I believe these tragedies, while so hard to fathom, can have a positive undertone (deep down) and have a profound impact on the way others live their lives. I hope to inspire you all half the way that this man has inspired me to live my life.
{C}{C}{C}{C}{C}4) A few quick notes of inspiration/kindness:
-Kevin Cullen giving us his hotel points to use at every single city we’ve needed a hotel to stay in to visit a doctor. We’ve probably saved $10K because of him. Unreal.
-All the neighborhood women coming together for all sorts of basket making, arts and crafts, auction related items and donations they made. I can’t thank you enough.
-Timmy Long setting up everything and anything the past year+ to help my cause. And he’s technically my brother’s friend.
-Softball winnings donated from my old high school friends. They passed up a free tab of beer and food and celebration to donate to my cause
-All my extended family and friends that have worked endlessly (I’m talking hundreds of hours) to set up this barn dance fundraiser. They have meetings at my parents places which I envision being secret society-esque endeavors with paddles and pledges, crammed into the basement closet. I seriously don’t know a thing about what they discuss! It has been a long, stressful couple of months for them and I can’t thank them enough.
-Mike Victor wanting to set up a trip with me…. Weekends are very booked, so I mentioned to Mike how I was going to the Bears/Jets game in NY in September with my family (whom love Mike). He was always a bigger baseball/basketball guy than football so I didn’t think it would come to fruition, especially with law career and a Monday Night Football game. Well, 30 seconds later (no joke) he replies with his flight info for the game. Made my month.
-My entire Mesirow group, for consistently helping me out so much, sending me birthday gifts to Natalia (haha) and just for being so awesome during this challenging time. I can’t forget about my Mesirow Dallas crew Melissa, Lisa, Kathryn, Irene and Catherine… they are constantly emailing me, sending me almost weekly cards and checking up on me non-stop. They are also working with my Mom and hooking us up for auction items and other awesome things!! Including some signed memorabilia of Golf’s rookie phenomenon Jordan Spieth (could just be golf’s next HUGE superstar … my Pops and I love his composure… probably our favorite golfer on tour now). He also signed one for me with a personal note! Jordan Spieth
-Mark Wilkening and his family (friends with Lindsay’s family) donating large amounts twice to my cause, without really even knowing me. It was great to meet him at Lindsay’s sister’s wedding. I know his law firm fairly well and they have all been so supportive.
-Tom Evon (Still “Mr. Evon” to me) and his family donating a ton of money and giving me a card and box of balls before Pebble. He is a standup guy with a big heart.
-My Chicago Uncles and Aunts constantly reaching out to me, golfing with me, cooking for me (I follow Uncle T’s cooking instructions exactly – hahahaha only a few brethren will get that joke).
-The Mustos for their everlasting support, their donation of puppies for the auction and just for being some of funniest-sick people I know :)
5) Lindsay’s entire family. Like Mr. Rudhman said in his Father of the bride speech… Scandinavian’s aren’t exactly known for their outpouring of outward emotions. Which makes me appreciate the never-ending love and support they’ve shown me even more– through both their actions and words. It is great having them as a 2nd family to go out and laugh with, and also the added bonus of doing some awesome adventures with Linds sister/brother-in-law Jen and Brandon. Never a dull moment when we hang out. Plus Lindsay’s whole extended family has been incredibly supportive throughout this process, frequently sending notes of encouragement and making me feel part of the family. Love you guys.
6) At MDA’s “Team Momentum” outdoor event, I met a special boy named Cam. Cam suffers from MD and is one of the coolest most charismatic people I have ever met. We hit it off and now I trade emails/texts with Cam and his family. To see how Cam has handled adversity should be a reality check for the rest of as to how to live our lives. I’m so excited Cam and his family will be coming to the barn dance fundraiser. Check out Cam’s Facebook Fan Page and a picture of us from the event! https://www.facebook.com/love4cam Team Momentum
7) Lastly, I’m thrilled to share a highly inspirational story about a fabulous group of women, one of which is my ‘first’ best friend's (Johnny Hummel) Mother-In-Law, Debby Fraliey. They had a tight-knit group of friends and one of them, Jolene Arend, would constantly be sending cards/gifts to people in need, even people she did not know. Whenever Jolene got excited she would yell out a big “Woo Hoo!” Just one of the most generous and uplifting people around, say her friends. Unfortunately, Jolene passed away from breast cancer but her spirit did not leave. Her friends/family decided to honor her uplifting legacy by creating a group called the “Woo Hoo Sisterhood.” It is an open group, including Cheryl Hoffmeister, Dee Horste, Brenda Gieselman, Emily Miller (daughter of Jolene), Deb Pryor, Deb Syverson, Jerri Zacha, Jean Wolff, Vera Schroeder, Darla Arend, Annette Schultz, Tina Verdeyen, Karen Hille, Vicky Bray, Kathy Corder, Bonnie Siebert, Angie Jones, Shirley Schaefer, Jenna Hunt, Leann Heiden, Cathy Rector, Vicky Conner, Annie Klitzing (another daughter of Jolene), Deb Ohnesorge and Deb Winter.
Throughout the year they old some simple events to raise money (events any of us could hold). Then, their group meets once a month with their sole purpose of sending cards/donations/food cards to those in need. I have received too many cards/donations for me to count. My FAVORITE part of the whole process is that each of them, on every card, writes a little note of encouragement, something funny, whatever comes to their mind to lift the spirits of those in need.
Think about this group for a moment and ask yourself, why can’t that be me? Why can’t I gather 10-15 people, do a fundraising event to collect money or simply donate $10-$20 per month and rotate sending it to those in need? What a simple thing to do on our end compared to the profound impact it has on those who receive. So grab some friends and DO IT. You can use a couple less Chipotle burritos or fast food burgers per month anyway (ask your spouse). That’s $15 right there. I have been talking to my friends and this is something I am going to start as well (maybe the "Shirts Off Brotherhood??"). Let me know if you want a list of people in need, I could send you a list immediately (both ALS and non-ALS people).
Finally, to end my last novel ever, there are no people I lean on more than my immediate family. If I told you all of the little things they do for me you just would never believe it (As context, they do so much that I consider my Mom driving 4 hours each way every other week to Grand Rapids and my Dad driving to the city and back to Schaumburg to pick me up for golf every time as ‘little things’ – I’m not even going into the big things here). Just take one look at the auction site and you'll have a small piece of knowledge as to how incredibly hard and time consuming they have worked for my behalf. Lindsay/Mom/Dad/Sara/Josh/Mel/Mario – I can’t thank you enough for everything you do for me. I love you all.
Save a Horse; Ride a Cowboy – See a lot of y'all Saturday!
-R2D2