Update by Eric - 7-16-11

A few weeks later,  I think it was the Saturday after Thanksgiving - I was out doing Christmas shopping and who do I bump into… Curt.  We exchanged a few jabs about being in Marshall's looking for something for our wives, and then we made somewhat of a quick departure.  I sensed there was bit of uncomfortableness on both of our ends - Curt was having a hard time speaking.  Again, I thought something is not right here.

A week or so later, I got up the courage to stick my nose where I thought it probably didn't belong.  I called over to Curt's to ask what was going on with the doctors and figuring out what's happening.  He wasn't home, but Leslie answered.  I asked Leslie what was going on and that I was worried about Curt.  Huh…. the phone call that literally stopped time.  I could hear her starting to cry on the other end of the phone.  She said, "Eric, we think he might have ALS."  I think I said something like "OK… what does that mean?"  She said "Lou Gerhigs Disease.  There's no cure."

OK… STOP EVERYTHING.  The entire world vacuumed into my head. This was not part of the plan.  Curt is the healthiest guy I know.  I mean seriously… he could drink a 2 liter of Mountain Dew and down bag of Chili Cheese Fritos everyday and lose weight, even at age 40.  Nothing was making sense to me.  

For a while, Curt and Leslie asked me not to tell anyone.  They had to figure some things out.  How do we tell the kids?  What about work, an income? How are we going to do this?  What's going to happen?  How quick are things going to happen? 

Myself, I remember driving and crying… at one point throwing a chair against the wall in my barn.  How could this happen?  I didn't know what to do.  I wanted to do everything we could together, but I knew his family came first and I'd fill in those cracks of time as it allowed.  Nervous… yeah… what do I say?  Will he want to talk about the deep subjects?  Or does he want to talk about the Spartan Basketball?  

Our families spent New Year's together that year - which was only a day or two after the official diagnosis from U of M.  Curt was still talking - but withbroken speech.  At one point during the evening as the kids were waiting for the ball in Times Square to drop,  Curt went into his office in his basement and came out with a Blockbuster video case… handed it to me and said watch this when you get a moment.  It was the movie FUNNY PEOPLE - with Adam Sandler.   There was a lot that went unsaid that New Year's eve - it was all so fresh.  A few nights later, Stephanie and I hunkered down after we got the kids in bed. I remember thinking an Adam Sandler comedy might do my head some good.  We put in the DVD and the opening scene is Adam Sandler's character, a comedian, in a doctors office being told he has a terminal disease and something like a year to live.  Wow…  I sat down to watch a comedy and selfishly forget about Curt's diagnosis for a few hours and the sledgehammer hit me again right in the chest.  Watch the movie if you get a chance… I still think it was Curt's way to tell me something, something like: 

 "I'm going to spend my days living… not dying."  

By Springtime, Curt's speech was gone.  But he could use his phone to type text messages and then hold it up to show us his parts of conversations.  His sarcastic wit was as thick as always. 

By July, picking up his cell phone became difficult.  His hands still worked but lifting his hands from down by his side had ceased.  I watched how he would swing his upper torso to get his elbow on his thigh, then lift his knee and thigh to get his hand to the counter and grab his phone.  He could do it quicker than responding to one of us who might ask to assist him. 

In August, my family and his spent a day at his mom and dad's cottage.  At one point, Stephanie, Leslie, he and I - and a few of kids lingering close by were talking.  We all were laughing, taking jabs at each other when I think Leslie poked fun at Curt.  His phone wasn't close by - so his response was to pick up an acorn with his toes, and while balancing on the other foot - he throws the acorn with his foot at Leslie - a near miss!  My son, Milo still talks about that one.  "Dad, did you see that?  He picked it up with his toes and threw it at her!"

By this time, I think Cindy and I started our "Tuesday visits".  I will admit there were Tuesday's that I drove home from Curt's, pissed at the world.  I was seeing the progress of the disease.  And there have been tough days, days when Cindy and I knew he was struggling.  However, most of those afternoons were filled with laughter, more of those jabs poking fun at each other and all we've been through together.

Yet, never would a couple weeks go by without some form of new equipment, or way of doing things.  Feeding tube, the trache, and eventually the ventilator. Sometimes I'd arrive and strange (but nice) people were over to fit him for a wheelchair, or take an x-ray. Then there was a new bed, a lift assist machine,  a ramp, and of course a handicap van had to be found because he was determined to see his kid's basketball games. 

During this time, Curt was using a foot-pedal, almost like a gas pedal but one that toggles in 4 directions in order to move a cursor on their computer.  This was how he communicated for a few months during those Tuesday visits with Cindy and I.  It was pretty painstaking for Curt.  It would take 5 or 6 seconds for Curt to type a single letter and eventually put together a sentence - which I might add was usually a smart aleck remark to Cindy or I.  It became a game for us… a word game, I'd always try to be the first to guess what he was typing - so he would not have to keep typing… with his feet.

However, movement in the feet was fastly deteriorating.  Now what?  I watched as Brantae would hold a notebook piece of paper to his big toe while Curt would sit in their recliner.  The paper had the alphabet on it - each letter in a 2" square and at the bottom of the paper was list of common words, things like "hungry" "hot" "cold" etc.  One of the kids or Leslie would hold the paper, and Curt would communicate by pointing to letters with his big toe to form sentences. 

Moving around the house started to require assistance.  Usually Leslie would help support him and walk very slowly to wherever he was headed.  Shortly after, the temporary wheelchair was replaced with the one Curt uses now.  It weighs something like 350 or 400 pounds, and it is motorized, but usually Leslie or one of the kids will push Curt and the chair manually from room to room… this is not easy.  Yet they put me to shame when I try.

Finally the EyeGaze came.  First realize, Curt took off flying on the EyeGaze and never went to flight-school.  It was the funniest thing - I remember stopping by the day he got it. The lady who got Curt rolling with the EyeGaze had just left - he finally could communicate fairly efficiently compared to pointing at letters with his toes, and man did he have a lot to say.

Over the past year and a half, I've seen a family figure things out one day at a time but who are always trying to be two steps ahead of this disease.  I have seen friends come together in so many ways to support Curt and his family by simply visiting, emailing, or by helping financially in order to allow Leslie to stay home and care for Curt which I know means everything to him. I've even seen people who don't know Curt and have found this web site and were moved to write an email telling him how they were inspired by his grace and spirit.  And the Links Fore Tomorrow events leave me speechless.  

There's been plenty of other obstacles that will go unmentioned for the Luttig family during this time, yet they keep taking them on - one by one.  I see Quinn stepping up, working around the yard without being asked, I see Brantae help Leslie with getting Curt into bed at night and do it with a smile and grace of a person 5 times her age.  Sadye… I have such a beautiful memory of Sadye holding her dad's hand as I pushed him in his wheelchair thru the concourse at Breslin after a basketball game.  She was not willing to let any obstacle come between them - literally, she even squeezed thru the doors going outside, along-side, not letting go.  

A year and a half since Curt's diagnosis… and here we all are… you, me… and Curt, Leslie, Quinn, Brantae and Sadye, jumping the hurdles, taking on the obstacles... and still living life.