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!
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 firstname.lastname@example.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.
--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.