Updates Page 4

CurtPosted: 9-14-11, from Curt

Apparently writing is a good way to bleed the darkness of your soul. I'm sure talking is also, but I don't have that option. You know how a good hard cry can cleanse your emotional burdens like a good hard rain will brighten and revitalize an otherwise barren landscape. For some reason I can no longer cry. Not sure if it is a by-product of ALS or a psychological shutdown my brain's defense system has incorporated. Either way the baggage has been building. Each new setback just gets thrown onto the top of the pile. I think I have done pretty well, considering. Everyone has their own cross to bear. I guess this is mine. I would've rather had to deal with balding or slight stutter, but we don't get to choose. Looking back on my life I can remember plenty of instances where my ticket could have been punched. Sliding through a stop sign on an icy road and not getting hit, sliding off a snowy roof but catching the gutter like Clarke Griswald in Christmas Vacation. Everyone has plenty of these experiences, this is just a bullet I can't dodge. I'm sure my misfortune will cause many to take new stock on their lives. The trick is to find your own personal motivation to wake up every morning and try to be a better person than you were the day before. Have you ever hunted for Morell mushrooms? They blend in so well you never see them. Until you finally see one and your radar is suddenly sees them everywhere. It's the same with ALS. I'm sure not many of my friends thought about it. I sure didn't. My wife's entire life will be scarred by it. Certainly my children will be too. There is man named Stu who runs a group called ALS Guardian Angels. He didn't know anyone with ALS. He heard of one o his children's friends relative who had it and was going to lose their house because of the financial strain ALS had put on them. He stepped in and paid the bills for them. Since then he has started collecting donations and helping anyone in the ALS community that needs help. No red tape, no bullshit bureaucracy?  He simply helps in any way he can. Computers, paying bills, flying someone to their children wedding, food, nursing assistance. Look on his website and you will be moved by all he's doing. There are many out there who are all alone in fighting this disease. I can't tell you how lucky I am to be surrounded by all of you. The reality of it is that without your golf outings, I would be sitting at Hazel Findley. Leslie would be working full time, and I would see kids when they visited. As it is, I am cared for by someone I love, and who works tirelessly to keep me healthy, happy and at home. I see my kids enough that I occasionally get sick of them. I help with homework, have friends over, and sleep in my house.  Sometimes we need to step out of our little bubbles and look around at the world around us to see how good we  really have it. Even someone in my position. 

Never give up and cure fu*#ing ALS, 


CurtPosted: 9-14-11, from Curt

I have come to accept the fact that there is no cure for ALS yet, and even if one was discovered tomorrow, it would be too late for me. They could not reverse the effects the disease has already done. I am kept alive by life support machines. It's easy for me to fool myself and think that these machines are mere nuisances, but without them I am no longer here. By going on these machines, I have prolonged my life for possibly a few years. I do not regret going on these machines. I have seen family and friends for an additional year. I've gotten to see the kids move up a grade in school, and watched them in numerous sporting events. Being on a vent, my eventual demise would most likely come from pneumonia. The other possibility would be my choosing to have the machines turned off.  The longer I have been on life support, the more I have thought about the latter. I would hate to put the weight of this decision on her, but we have discussed it and have an understanding. I recently decided to change my paperwork to DNR(do not resuscitate). When I was walking, it seemed that a DNR seemed ridiculous. The further I've slid down the precipice the more sense it made to me. It would be as close to a natural death as I could get. I have not written this to create sympathy or pity for me, but rather to let everyone know what lie a head in my future. I know many of you who are reading this are family, close friends, acquaintances or even complete strangers, I hope that no matter what decisions I make in the future that you will still remember me as having fought this disease with all I'm worth. At some point I have to decide if I am staying here to make everyone else feel better, or if I'm still staying here for me. I am not so much afraid of dying, as I am of not living. Not seeing all of you.  For now, I'll keep fighting and live day by day. Maybe I can find some extra pouches full of sarcasm laying around the house somewhere.
Never give up & cure ALS

Posted by Leslie, September 13, 2011

It's been a very long time since I have written an update.  I guess I just thought it would be , I don't know, nicer for everyone to hear from Curt.  As many of you know, I am a pure David Cook admirer.  His music has taken me to levels I don't think anyone would understand.  His music gets me through the roughest and darkest of days.  On his new album, (and I highly suggest you purchase it) he has a song titled "Time Marches On."  It has a line:  time marches on, right or wrong, never waits for no one, no.  Every day I try to go for a walk.  Often I go and have a much needed cry.  Music blaring, eyes wet and blurry. Other times I just walk and think or try to clear my clouded head.  Therapy?  Relaxation?  Exercise?  Keeping sanity?  Just getting away?  Well, probably a conglomeration of all of those.  When I walk, I look - at everything.  I think that may be the artist in me.  And every day I notice something different; something beautiful.  One of my favorite parts of my walk is when I make my turn around and head back down toward the cow farm.  There is a field there that is filled with growing corn, and throughout the summer I watch the corn gain height.  A path of eager stalks stretching up the slight hill to the horizon and greeting the sky.  As summer fades into fall, I see a definite change.  A partial section of the field is already harvested and it's a reminder that time doesn't stop.  Right or wrong...it keeps going.  And it's up to us, to try our best...to live.
Each of us has our different struggles in life.  Some of us choose to share those struggles.  Other's choose to keep them to themselves.  What's important is that each of us may choose to handle them differently, and what may be right for one person, may not necessarily be right for another.  Curt and I have had our struggles and how we handle them, may not make sense to others.  And often, he and I have different, separate struggles, and often, we don't agree with how each other is handling them.  Sometimes there is not a black and white answer.  There is that color of gray.  It's being willing to try to understand and respect that each of us may view things differently.  I do know that some things can't be understood.  But I guess that's where one needs to find the strength to try to find peace. I feel that as I have grown older, I have come to have a better understanding of life.  And as hard as it is knowing that Curt has a terminal illness, time isn't stopping.  We need to keep living day to day and try to make the most of all of it.  Because I may not be here tomorrow.  You may not be here tomorrow.  You need to live.
Yesterday a friend, Todd Brown, came over to visit Curt.  He visited for quite awhile and then asked if he could have a few moments alone with Curt.  I made my way to the back deck to take a break and do a little bit of reading.  After Todd departed, Curt shared with me some of the things that Todd had told him.  If you know me, I just started crying.  Todd has been working on something for our children the past two years (along with several other caring people.)  What touched me most, was that Todd took the time to express to Curt, that he has always looked up to him.  From my understanding, Todd is about 4 years younger than Curt and Curt coached him in basketball.  Todd has always thought so much of Curt, that when he went to choose his own baskektball number, he chose the number that Curt wore on his jersey.  He also remembered Curt being his "Buddy" at St. Joe during Lent.  My heart was warmed thinking that this kind man, would take the time to come over and tell Curt how his life was touched because of him and how he viewed Curt as a role model.  In a lifetime, I don't think that many people get to hear how one's life was touched because of them.  What a gift he gave Curt and I am not sure he even realized it.
After we talked about Todd's visit, Curt said he felt that he doesn't have anything left to give to people.  I tried my best to explain to him that through this fight and his updates, he has given many people a new view on life!  From spending more time with their children, enjoying what they love to do, greeting each day and being thankful they are alive and can walk, talk and eat!  Being thankful for all of those little things.  He's changed people and continues to do so, in such a positive way.  He may not be able to move...but he moves others' with his words.
Love and Cure ALS,

CurtPosted: 9-11-11, from Curt

Unbeknownst to me, I was told my eyelids don't shut anymore. Apparently my eyes just roll up giving me the illusion of darkness. Maybe I'm reading my own mind. Pretty sweet look for upcoming Halloween though. I have a pretty limited costume selection... Steven Hawking or that guy from the X Men. I guess I could be Mater from Cars. It's been a tough month, seem to be getting assaulted from all directions. ALS has pretty much kicked my ass physically, so I suppose it was time for my mind and spirit to take a beating too. I guess the difference is that i can still control those. So, I guess maybe it's time I did. I have a hard time escaping the realities of my shrinking world. I used to be able to use some of my cognitive ability doing bids and running jobsites, or burn off my energy playing basketball. Now, I have no release. I think that makes everything harder. Can't escape my own thoughts. Can't even scream.  I never knew how cathartic being able to yell out or swear was. Now i do. 3 things that don't go well together, a little girl named sadye, a quadrapalegic, and fingernail polish. You figure it out.  Brantae got to go to the MSU game yesterday. Sounds like she had a blast. Quinn has another football game today at Haslett. I'm going to sit this one out. Never know if I can get a place to watch from at away games.   Lots of talk now about new developments in ALS research. Hopefully it pans out and something comes of it.  Its been a long time and still nothing to fight it with. 

Never give up and cure ALS


CurtPosted: 9-8-11, from Curt

The kids are all settled into school and no calls from the principals yet. Quinn is in the middle school and the girls are going to a new school. East Olive is a country school 5 minutes from our house. Big 3rd, 5th, and 7th graders. They are all pretty excited to be back. The house is a lot quieter, thats for sure. Most parents are glad to see their kids leave, I enjoyed seeing them running around. It's a little different for me though. I remember when I was first diagnosed, I continuously had these thoughts bouncing around my head, I am so f+#ed, or dead man walking. I had no major symptoms yet, and felt so different walking amongst everyone else. I kept this to myself, I've never told anyone about it. I felt it would just bum them out and not really help me any. Lots of people said I should go to support groups but I never did. I knew what lie ahead, and didn't want to sit in a room full of people at varying stages of my future. I received an email from someone who had just been diagnosed in Dewitt. He had some stiffness in one arm as his only symptom. I told him of my condition, referred him to our website for more info and said I didn't know if seeing me would help or hurt his psyche. I never heard back from him. So he understood how I felt I guess. My wife is an artistic genius. She takes pieces of rusty metal, tools, discarded pieces of wood and paper and turns it into a 3 Dimentional masterpiece. The walls of our house are a backdrop for her creative visions. She can't just put a picture in a frame either. She may decopage a picture to a block of wood, or use torn paper to create a matt within the frame. It doesn't matter what room I'm in, I am surrounded by the smiling faces of my wife and children. Pictures of me when I was whole, kissing, hugging, and standing with them all. I never truly appreciated these things as much as I do now. I never told her just how moving her creative abilities were. If I had known then what I know now, it truly is all the little things we say and do in life that make it all worthwhile. 

Never Give Up, and Cure fucking ALS, 


CurtPosted: 9-6-11, from Curt

School is back in session. This was  always a melancholy time of year for me. It is even more so now. I used to get bummed out when we would close up the cabin, take out the dock. Now I can't even participate in any of it.  3 summers ago was my last summer at cottage. Swimming with the kids, going for boat rides and hitting all the waves so Brantae and Sadye would squeal with delight. That last weekend was when I first noticed something felt a little odd about my breathing. Who would have thought? I went up to cottage last weekend again. Probably for the last time. I got to watch the kids swim. They had a blast. Wasn't quite the same for me. I really enjoyed watching the kids swim, but it was hard not thinking of all the things I can no longer do. Will never do again. A fly just landed on my nose. I can't even twitch my nose to make it leave. just grin and bear it. When we got home Brantae told me she had a blast at cottage swimming, and that it wouldn't have been the same without me there. It would have been boring. Very nice of her to say, but I really don't feel as though I'd be missed. Perhaps I'm wrong. I cannot imagine life without the ability to communicate in some way. There is a chance my eyes could 'lock' and then I would truly be trapped in my body. I know Leslie loves moving furniture around, so I guess I would become part of the living room set. At that point, I think I would let ALS finally win. Without any means of communication, what would be the point? I've noticed lately that it's harder to keep the sarcasm and humor on the tip of my tongue. I hadn't written an update because I couldn't think of anything positive to say. But ALS has that affect I guess. It takes and takes. I know they say it only affects voluntary muscles, but I think its been creeping into my spirit as well. Hopefully i'll bounce back. Maybe when the kids come home from school with stories of their first day. 
Never give up and Cure ALS


CurtPosted: 8-17-11, from Curt

This week was our 18th Anniversary. Time sure flies. Seems like such a short time ago, we were just meeting, innocent flirtations. Who knew. All the accumulations your life has. Every year you gather more items, put the old out to the road or have a garage sale. Too bad I couldn't put ALS in a  garage sale. You'd have to be a helluva salesman to sell that item though. And in good conscience, I couldn't stick anyone with it. Not even my worst enemy. I would surely take a double dose if it meant nobody else would have to deal with it though. I always think I will do more updates, but facing the reality of it all is usually to hard to take. Easier to text or email friends, watch the kids, watch the Tigers, or read about sports. Even that is hard to do though. I will see all the great recruits the Spartans have for the 2012 season, knowing more than likely I won't ever see them set foot on the floor. But to be honest I wasn't sure I would be seeing this coming football season. But it sure looks like I will. I am not giving up, believe me. I would liken it to a soldier going into battle. Always expecting to come back, but always having a cloud hanging over your head, never in control of what lies ahead. If this update seems a little dark, I blame it on my listening to the new Foo Fighters album Wasting Light. Great album, best listened to a little loud. It is a little edgy though. I promise next update I will listen to Dave Matthews or Train and try to keep it a little more upbeat. 


Sometimes you don't realize what your life has truly become until someone points it out to you. We were filling out medical forms last week, for the hundredth time, when a person asked me if I ever thought about suicide. My immediate response, after a minute of typing, so I guess it was more of a pensive response, was ''now how would I go about doing that? ''  I suppose I could divorce Leslie. That would do it. Or, go online and cancel our power. I have an extreme addiction to electricity as you know. Other than that I don't think it's possible. I'm not sure if she checked the Yes or No box. I guess it doesn't really matter. 


CurtPosted: 8-3-11, from Curt

Kids TripsThe other day Quinn was complaining about how he couldn't stop biting his fingernails. I told him it can't be that hard, in the past year I have stopped cracking my knuckles and biting my cheeks. Two lifelong bad habits. I have to admit I do convince Sadye to crack my toes occasionally. See, there's a bright side to everything.

Kids have all been gone this week. Quinn went hiking in Colorado with his uncle Ernie and cousin's. There was a bear in his campsite the day before they arrived. I imagine he is devising a way to set some sort of trap. He watches too much Survivorman and Bear Grizzlie's. Sadye and Brantae are staying at uncle Ron's and aunt Sherri's.  From the sound of it, they're getting spoiled. McDonalds breakfasts, carnivals, boat races, bike riding, concerts, swimming, beaches...... sign me up, sounds better than summer camp!  Sadye texted me that her cousin, Sammy and her, read the book Green Eggs and Ham, then they made some green eggs and ham. "Dad," she proclaimed, "I didn't like them though..... I loved them." Those are the kinds of things that make everyday worth while. She still tells me she hopes I get better so I can give her piggy back rides to bed again. I think she's just too lazy to climb the steps.

Well, pretty much every muscle in my body is paralyzed now. I can slightly twitch my legs and for some bizarre reason I can move my right index finger about an inch. It's not useful for anything, but when I move it I can at least tell that my arm is there. It's a rather weird sensation when you wake up in the dark, and have the feeling that your legs are crossed, and when you look down your legs are laying there straight out, just like they were 4 hours ago. Lots of inappropriate commas in that sentence. Sorry Mrs. Markman. Ocassionally I wake up and have the feeling that my hands are interlocked behind my head. Odd. The worst thing that happened recently was I was dreaming that I walked into the bathroom, lifted the lid, and started peeing. Suddenly my brain caught on and my first lucid thought was, ''Shit, I can't stand up and pee anymore ''. Luckily I was able to stop the flow before I was in a waterbed. I need to start dreaming a little more creatively. Last week I dreamed I was walking through Menards picking up supplies. Another time I was making a tuna fish sandwich. Why can't I at least be an astronaut making a sandwich in space? I wish I was making this up.

Dorothy Curt and MarilynOne thing you may not know about ALS is that although I can no longer move my muscles, I still have all the feeling in them. I can feel hot, cold, pressure and pain. Especially when Leslie drives my wheelchair, and my feet, into a doorjamb. Or my brother ''accidentally'' spills cold water in my lap. I can stand the ocassional grimace. Although I must say, swearing in your head gives nowhere near the satisfaction you get when screaming it out loud. It is worth the discomfort because I can still feel hugs, kisses, and pats on the arm. Now don't get any ideas about coming up and laying a big one on me. A squeeze of the arm or hug will do just fine. The last woman to kiss me left some pieces of corn on my cheek. Another kissed me in the front of church, in front of God, Father Eoin, and the whole parish. Apparently I am attracting a new demographic of women. I guess I'll take what I can get.

Never Give Up & Cure ALS,

CurtPosted: 7-26-11, from Curt

In the Bible there is the story of David vs Goliath. That is very similar to what I feel I face everyday. The differences are that in my battle, Goliath seemingly gets bigger everyday, while I seem to shrink. David reached in his pouch and found rocks to hurl at the giant. I reach in my pouch and can only find jokes, sarcasm, and friendships. These seem to bounce right off the beast and land harmlessly at his feet.  But I keep on throwing them at him, running in circles, staying just out of his grasp. Now in the Bible the story has a happy ending. No such luck here. Sometimes I wonder if I should just lie down and let the giant finish me off.  But where's the fun in that?  The best part of a good story is in the telling, not the ending, right? That's what I've convinced myself. Honestly, there is only so much good I can squeeze out of every day, but what I can manage to get is worth it.

Summer is flying by and Sadye's soccer has started up, Quinn is giving football a try this year, and Brantae's basketball starts in a few weeks. I was always an outdoor person so not being out there with the kid's is especially hard on me. I can't give them a hug when they fall or help them practice.  Sucks. Put one more in the bad column for having ALS.  So many parents are helping out with rides for the kid's to and from practice and other things and we can't thank them enough. Sadye's favorite part of sports is Gatorade and snacks and playing with her friend, Avery. Gotta love it. She infuriates us one minute and has us cracking up the next.  Boys BEWARE.
Never Give Up and cure ALS,


EricPosted: 7-16-11, from Eric

Curt asked me if I'd mind writing an update.  He thought it might show a different perspective on Life of the Luttigs.  I'm not really sure where to begin, that is with our friendship - I could go as far back as 7th grade, circa 1980 if I'm doing my math correctly.  Wow… 1980.  Kids, we were just kids.    Quinn will be going into 7th grade this fall and my daughter Ella will be going into 6th… that kind of puts a perspective on things for me, with how long we've been friends.  I may have to save the majority of the past 31 years for another time, but man-o-man we've done a lot together.  In high school, seems Curt, Kirby and I did just about everything together.  Played lots of tennis together, riding the streets of St. Johns endlessly on our ten speeds, roommates at MSU for years, spring breaks in Florida, Texas and Mexico.  So many good times.

Once we both married and began families - we naturally became busy with life. We had to work for more than beer money, we had to support a family, and be not only husbands, but dads too. All this happened at about the same time for both of us.   Still, every month or so, I'd get that call from Curt, "Hey dude, I'm working in East Lansing today - how about a Crunchy burger for lunch?"  Every so often our schedules would allow us to go get that burger and talk about the family, work, Spartan basketball and life. 

In November 2009, I got an email from Damore or B. Stacey saying "Get Luttig and meet us at the Kellogg Center ramp Saturday for tailgating before the Spartan game."  Kirby was going to be able to make it from Ludington, Thornbury - from Gr. Rapids and Brockmyre was coming in from Spring Lake, Damore from Battle Creek and Brian from Holland.  Curt picked me up and we headed for the tailgate.  Everything was business as usual, except we couldn't find a parking spot within a mile of Kellogg and we had to hoof it thru the neighborhoods of East Lansing.  I remember Curt was two steps ahead of me… I think he was thirsty for whatever Damore was serving at the tailgate.  We had a great time, headed home - Curt dropped me off - the end of a great Spartan Football Saturday afternoon.

About two weeks later, Curt called and asked if I had received an email he sent with an attachment he couldn't open and wondered if I could and if I would print it out for him.  I remember having a bit of difficulty understanding what Curt was saying, but blew it off as a bad phone connection.  Curt stopped over a few hours later to pick up the print and we chatted a bit and I noticed his speech was different… I questioned it to him -  "hey man, what's going on with the speech?" and I remember his reply - "Not really sure, I've been going to a doctor who has me going to allergy specialists to get it checked out.  Thinks maybe it's an allergy or something."  Something didn't seem right to me.  [Continued >]

CurtPosted: 7-13-11, from Curt

For the most part we try to keep life around our house as normal as possible, even though it is very far from normal. The kids still never listen to me, Leslie is always right, I am always wrong, I never pick up after myself, and the kids still fight and argue. And I wouldn't want to be any place else in the world. You would think I would have quite a bit of anxiety and fears being completely paralyzed and totally dependent on machines for eating, speaking, and breathing. But for some reason, for the most part, I am at ease with it all. Well, it actually isn't for some reason, it's because of Leslie. Sure we still argue occassionally, I get on her nerves, she gets on mine, but she is always there for me. She knows what I need, what needs to be done, how to do it. And if she doesn't know she figures it out. I know it is extremely overwhelming for her, and that isn't fair. But there isn't really anything fair about any of this.

Lenon Electric installed a backup generator system for us over a year ago due to our frequent power outages and my addiction to electricity. It must be a very efficient generator because it has never had to be used yet. Easily our longest stretch without losing power. Hard to believe that now we are actually disappointed when storms come and we don't lose power everytime a storm rolls through, Pat will call to see if the generator has kicked on yet.  We're keeping our fingers crossed for the next one.

Well, I used to sleep like a rock. Lie down, out like a light till the next morning. Consequently, I didn't usually remember too many dreams. W
ell, now that's all different. I was always a side or front sleeper. Now I lie on my back with my back slightly elevated. Not too comfy. I wake up ocassionally in the night, can't toss and turn, so I usually restlessly sleep through the rest of the night. This causes me to remember some of my dreams. Now, you would think they might be erotic, adventurous, or possibly nonsensical wouldn't you? Well, the best two I've had lately were not exactly exciting. In one I sat down and ate a whole bag of chips. Honestly, a bag of chips. They were Krunchers! Sweet Hawaiian Onion. And boy were they good. In another dream I was doing all the trim mowing in the yard with the push mower. Around every tree, flower box, and fence post. And boy was it fun. Now I think this proves two things. One, I'm a pretty simple person. And two, it's the simple things in life that truly make it worth living. And I think that's what I miss most.  Kissing my wife, hugging my kids, going grocery shopping, slapping someone on the shoulder with a smile and a hello.


Live life to its fullest and enjoy it all. 

Never Give Up and Cure ALS, 



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