Updates Page 3

CurtPosted: 10-18-11

When my friend's asked me about having a golf outing benefit for our family, my first thought was how great it would be to see all my friends together. It turned out to be that and so much more. I've mentioned previously about how the money raised helped us tremendously. I didn't talk so much about the friends' that made it all possible and helped or participated. The core group of Eric,  Stephanie, Ted, Cindy and David set it all up and did all the dirty work. Behind the scenes people were getting and giving donations. There were also numerous volunteers at the event that made it all possible. What was supposed to be a simple golf outing turned out to be an extravaganza. I've been to some outings before, and this one blew all the others away. I was shocked to see people I hadn't seen in 20 years. Seeing everyone milling around, laughing, going down memory lane. This was exactly what I had envisioned. It's funny how friendship lasts over time. You can have a conversation with someone you haven't spoken to in 20 years, as easily as if it had been a week. And it doesn't matter that the individuals talking have both changed dramatically over the years. There is a comfort; a certain security in the memories of an old friendship.


I have taken a lot of happiness over the past few years reconnecting with old friends. This is one positive my situation has granted me. However, I do not know how my slow demise has affected those I am in contact with. I selfishly have been taking support and comfort from other's while giving none in return. Wouldn't it be easier to hear about someone's death, whom you haven't spoken to in 20 years,rather than to follow their death along as it progressed over years? I can't answer these questions. Can only wonder.


To try and end on a good note, our young actress Sadye gave us another slice of brevity in a typically tense day after dinner yesterday. Leslie was cleaning my trache, a pain in the @+& bi-daily routine, and talking seriously about something, when Sadye yelled, ''Daddy, why won't they let you carry a gun? '' I had no clue what she was talking about. When we both looked over at her, she flung her skinny arms up and flexed her tiny muscles and yelled, ''BOOM, BOOM, POW. '' She was apparently giving us a gun show. Now the joke made no sense, but the delivery was impecable. There was my five minutes for the day.


Never Give Up and Cure F#^$€ing ALS,



CurtPosted: 10-04-11, from Curt


There comes a time in every parents life where pupil becomes the teacher. It doesn't happen all at once. It happens in little increments. The first time your child honestly beats you in a game of cards. Or when they make a smart-ass comment about something you've done wrong. It certainly happens when they are trying to explain their math homework to you. When we are young we think our parents are dumb-asses. They think they know  everything and are always bossing us around. At some point we gain respect for them and slowly begin to understand what they are all about. As parents  we see everything from a reverse perspective. We suddenly see how foolish we were growing up. All the lessons they fruitlessly tried  to impart on us, we are are now trying to extend to our children. Over the  past ten years I had begun to be able to help my father in many ways. He felt comfortable trusting me to put the boat up and secure the cover correctly, open and close the cottage, and even came to me for advice on certain projects he did. I learned almost everything I know from my dad. From building skills to just being a good person. This is a man who worked 50-60 hours a week as an electrician at GM and then came home and built sections of walls on a trailer in his garage so he could drive them up north on weekends and put together a cottage for his family. If I even came close to being half the man he was, I would be satisfied. I have only had a short time to be a father. I will never have the opportunity to be a grandfather. I was really looking forward to that. I think I did a pretty good job as a dad. In fact, I think it is the best thing I ever did. Unfortunately I will be gone when I am still in the dumb-ass phase of being a parent. Hopefully when they grow up they will look back and change their opinion of me. They will always be surrounded by me as they grow. Leslie will always remind them who their dad was, pictures of me will adorn the walls, they will grow up in the house that I built, some of my friends will be their teachers, other friends will still be Leslie's friends and be around often. I feel that I led by example well when they were growing up, and taught them right from wrong. I hope that my last time spent with them will teach them some sort of lesson. I am still trying to be as good a father as I can to them. Leslie will have to do the rest. It will be hard, but I'm confident she will do an amazing job. Being a parent often feels like a job, but in retrospect it is a gift. A chance to pass on a bit of ourselves to our children. So that when we're gone, a part of us will still live on. Hopefully in the years to come, you will be able to look at our children and see a bit of me, living on in them. 
Never Give Up, and Cure Fu*+#@g ALS, 

CurtPosted: 10-03-11, from Curt

Everyone has a lazy streak in them. Although we hate to admit it. When u get home from a long day of work the couch and a cold bottle of something with a touch of alcohol beckons us. it is a strong gravitational pull that pulls us into the horizontal position. Take it from someone stuck in the horizontal position, the vertical position is much more enjoyable. I live my life in about 30 square feet of space. Day in, day out. Pre ALS I would usually come home from work and be mauled by 3 kids. I would not always be up to it, and maybe was a little grumpy, but out we'd go for wiffle ball or kickball. I was watching home movies recently and the timestamp was always just after 5 and Les would be videotaping the kids and I outside playing.  My job entailed meeting with potential clients, measuring jobs, estimating jobs, typing up contracts, ordering materials, getting permits, working at the job daily, dealing with customers during job, billing, collecting and depositing checks, entering the whole mess into Quickbooks, paying all bills, and paying employees. All with about 3 jobs going on at the same time. But I loved it. Quickbooks was my nemesis. By the time evening rolled around, the TV beckoned much louder than the computer. Inevitably tax season would come around and I would have to enter all the data in a flurry. Luckily our tax man Jimmy was patient and accommodating. Looking back on it all I miss it tremendously, even the Quickbooks. With nothing to do the brain gets pretty bored. My memory isn't as good as it used to be. I think not using it as much has caused it to atrophy somewhat, much like my muscles have. I had days I would rather lie in bed than get up. Everyone has that. Now I wake up every morning at 5 a. m. and wait for the rest of the house to awaken. Unable to move at all, I read or write, assuming my computer hasn't locked up for some reason. In which case I hope someone happens to come in the room and notice or I just have to lie there waiting. I watch the world go by outside my window. Driving, mowing, jogging, walking dogs, playing, laughing. All things I foolishly took advantage of. My wife often asks me if I want to go out and sit on the porch. I never have. Truth is if I go outside, I can't use my eyegaze computer. It won't work in the sunlight. So I can go out and sit in silence and hope mosquitos don't land on me or that I don't have to go to the bathroom, or I watch it all through the window.  Another reason is all the hassle involved in me moving me anywhere. Unhooking wires and cables and the eyegaze and then hooking it all back up again. It already takes over an hour to get me up in the morning and the same at night. Seems like  a lot of work for little benefit. I long for the days where I could mow the lawn. The smell of fresh cut grass and a hint of gasoline, the hum of the motor. One of our home movies showed me mowing the lawn and a cute little 4 year old Quinn mowing right behind me with his toy mower. Priceless. You'd be surprised how much you miss the mundane 9 to 5, the errands, honey-do list, house maintenance, lawn care, etc. when you can't do it. Makes me embarrassed that I ever complained about it. Puts it in a whole new perspective when you watch others outside your window mowing your lawn, cutting your trees, pitching to your kids. 
Never Give Up and Cure F*#@&ng ALS, 


CurtPosted: 10-02-11, from Curt


I'm sure you're all familiar with the saying ''life sucks and then you die''. Or maybe ''if you're not busy living, you might as well get busy dying.''  Such positive phrases. It seems easier to think about death when your not facing it. When it's thrust into your face, you have a completely different view. Some people are paranoid about death, always looking for it around every corner. Like a person looking in their side mirror and seeing the fine print  object may be closer than it appears,  death seams to be stalking them. These people usually live to a ripe old age and spend their retirement years in a government run facility. Others think very rarely about death. It is something that happens to  'other people'. They are invincible right up to the point when they slip on a bar of soap in their shower and break their neck. Many people like to say,  ''well I could die tomorrow driving my car,  or be diagnosed with cancer''.  Well like my friend Tom used to say, ''i ain't no mathematician, but you can count on me. ''  If you figured the percentages on you dying tomorrow or next year,  the percentages would be pretty low. Like in the 1% range or lower. Hell, I'd take those odds. My odds are at 100%. The only variable is how soon. People need to think about death sometimes as a motivator to live. A catalyst to get your ass moving. Life is a fragile thing. It's amazing we can survive at all. We've all had our brushes with death, and most of us learn from them.  The truth is you just have to want to live. Halfway down, the man who jumped off the bridge probably wished he could fly. Most of lives issues seem quite trivial in the light of day. I made the choice to live when I had my trache put in last year. At the time it was a no brainer. I wanted to live. In hindsight maybe I would've made a different choice. I can now understand a little better why most choose not to go down this road. It is a rough road fraught with many pitfalls and challenges. I have learned quite a bit about myself and others during this journey. I have found many inadequacies in both who I was and who I am now.  I cannot change the past and don't have much time to change my future. Others have amazed me with their generosity and compassion in the face of adversity. While some have disappointed me as well. I feel I am entering the final leg of my journey. My body has succumbed to ALS, and my mind and spirit are also beginning to feel the effects of the disease. I try to embrace each new day and absorb from it what I can. I think thats about all that anyone can do. I don't think you should live each day as if it's your last, but rather like it's your first. Open yourself up to the possibilities of each day and live life.
Never Give Up and Cure Fu*@#&g ALS, 

CurtPosted: 10-01-11, from Curt

Last night at about 10 o'clock I had a feast. Right in my bed. A rotisserie chicken breast and drumstick, homemade mashed potatoes with skins, salt, pepper and garlic, and 2 fresh ears of sweet corn lathered in butter and a dusting of salt. All washed down with a frozen mug of Stella Artois. The best part was there were no dishes, no indigestion, no weight gain, and no guilt after polishing it all off. Of course this veritable feast was all just a figment of my imagination, and while momentarily satisfying, the feeling is as fleeting as smoke in the wind. But i'll take what I can get. At least I have the memory. The girls love watching Cake Boss, not sure why. Yesterday it was on once again. The hardest part of watching that show for me is all the crispy treats they use for making the bases of their elaborate cakes. Now I have a weakness for crispy treats. I've been know to make a batch of the treats and eat the entire pan. The crispy, golden, sugar squares just seem to disappear in my presence. I commented on how good they looked on TV and my daughter Brantae must have seen the sparkle in my eye and the drool running down my chin because she said, ''Dad, I wish I could trade places with you for 4 days, on and off. Then we could take turns with ALS. ''  This is the second time she has said something like this. Don't really know what to think. Such a sweet gesture, but a deal I would never make.  Not even for crispy treats. 
In my normal life, pre-ALS,  I was a pretty even keeled guy. Never too high, never too low. I kept my emotions in check and was never overly dramatic about anything. Looking back at how I was and how I am now, I realize what a fool I was. I now wear my heart on my sleeve. I can't overtly express my feelings physically anymore (which sucks), but I have been writing letters to close friends and telling them how important their friendships were and how much they meant to me. My family knows how I feel about them also. I think I was always a little guarded with my emotions. I know on occasion my wife had shown me pieces of her artwork and I would say simply,    ''that's cool. ''  while inside I was thinking, how the hell did she come up with that? That looks sweet, how does she create these things.? People can't read minds. Implied meanings don't always cut it. Spit it out, say what you're really feeling. I think too many people glide through life. Take some risk. Put yourself out there. Share your opinions with the world. Some people may disagree with you, but thats what life is  all about. I'm sure many people disagree with alot of the drivel I sling out in these posts, but I sure feel a lot better getting it out of my head. Better out, than in, Shrek always says. 
When I was first starting to slide down the ALS hill, getting trache and sleeping with vent at night), I had to fill out all sorts of paperwork. Well,  actually Leslie did. This included not wanting a DNR (do not resuscitate) order in my file. I was walking, breathing, moving my arms somewhat. Why would I not want to be saved at all costs if something went wrong? Well,  a lot of time has passed and the only thing I can move now  is my eyelids somewhat,  and twitch one finger. So as this has progressed so has my outlook. I recently changed all my paperwork to DNR. I figure if I have a cardiac arrest or some other major breakdown, than my time has come. I don't want to sit around with limited mental capabilities. I mean, let's face it, they are starting out a little low to begin with. Leslie has grudgingly accepted this and some other stipulations because she knows it's what I want. She is a fighter to the end, so I know this was hard for her to accept. so really not much has changed. I am just trying to keep my life in my hands and we will continue to fight day by day, still trying to wring out every drop of life we can. 
Never Give Up And Cure F&#@*ng ALS, 

CurtPosted: 9-30-11, from Curt

Every day it seems we are taking stock of what we have. Too often our focus tends to be on what we don't have. Whether its money, clothes, cars, a bigger house, or a cottage. These things are all nice to have but they really aren't what make our lives worth living. In the last minutes of our lives I don't think any of these things would even cross our minds. Would u want to have your new speedboat by your bedside on the last day of your life? Or would you rather have your wife and kids? Seems like a silly question doesn't it. Yet, everyday our focus tends to be distracted by the trappings of everyday life.  Theres nothing wrong with it either, as long as we don't neglect the things that are truly important. Looking back on my life I was guilty of this more than I care to admit.  When things are going fine you have plenty of time for distractions. It seems that only when the going gets tough do we tend to really examine our priorities. I was forced into this position. It would be impossible for a healthy person to have the same outlook as a dying person. But you can take away some of perspectives and appreciate your life and those around you more. Even a little change can make a big difference. It's easy to be a good person when things are going well in your life. Quite a bit harder when times are tough. I'm still making mistakes and don't always do or say the right thing.  I don't think man is measured by his actions when times are good, but on his actions when times are tough. Times are tough for me now, and I'm trying to do the right things. Sometimes it's hard and sometimes I still mess up. But I'm still trying. 

Never Give Up, and Cure F+*@#ing ALS

CurtPosted: 9-29-11, from Curt

I'm sure everyone out there wonders why something so horrible can happen to such a nice guy like me. I sure as hell do. I am comfortable with who I was before ALS. I wasn't the star athlete or college genius. I didn't have Hollywood looks or money up the wazoo. I was average. Got along with most everyone I met, and loved living life. Not much different than all of you out there reading this. Now if there was a terrible disease out there sweeping through the death row inmates in the world would many people care? It may even be revered and thought of as a good thing. Saves the tax payers money and is Gods way of showing final retribution. I believe the reason bad things happen to good people and not only to death row inmates or people you think may deserve it,  is because it makes people care. It brings the best out of the people directly surrounding the affected individual. Or in this case, me. I have experienced more kindness, compassion and support over the past few years than I would've thought humanly possible.  

I received an email from one of my best friends this morning and he told me his 13 year old son asked him if he could wear a purple jersey in honor of me  during his JV football game. Reading this brings out a dichotomy of feelings in me. Anger that this disease forces a young man to think this way as he's watching his dad struggle with the realities of his dying friend, and pride in seeing the greater meaning linked to this seemingly innocent gesture. There are countless examples of this I have seen. When first diagnosed I was in the middle of the season coaching my sons 5th grade St. Joseph basketball team. As the season progressed, so did the ALS. I started the season running with the boys and ended the season with a feeding tube because I could no longer swallow food or drink. I had lost my voice also. Giles stepped in and became the voice of the team, parents bought ALS shoelaces for all the boys, concessions sold ALS bracelets and donated money from 50/50 raffles, and many prayers were sent up to the heavens. Two of my closest friends from high school, Eric and Cindy,  began coming to my house once a week to visit and let my wife escape the rigors of life with ALS for a few brief hours. A small golf outing was set up to help us out with the costs of life with ALS. So many people volunteered and collected donations that it became more of a gala event than a golf outing. In 2 golf outings they brought in over $120,000 that allowed me to live at home and my wife to care for me. I have received countless emails and letters from old friends, current friends, strangers, and relatives. All with the central theme of praying for the best for you  and your family.

Sometimes during the darkest hours of a bad day a simple email I might receive rises me up from the depths of my despair. I am not the only person under the circumstances. There are millions of people out there. I am simply the sacrificial lamb of the small circle of people surrounding me. I am bringing the best out of many, lessons learned, and a better appreciation for all the little things we take for granted. There would be no good without the presence of evil.  Am I glad I have ALS? No way jose. Would I wish it upon anyone else? Never. Am I thankful that something good may come out of it? Absolutely. These have been the hardest 2 years of my life,  but they may very well be the most important. Life is messy. Sometimes you just have to get out a shovel and dig your way through it. 
Never Give Up and Cure fu*@#ng ALS, 

CurtPosted: 9-27-11, from Curt

Memories. They are mostly what I have now. Luckily I have lots of them. Most good, some bad. I try not to dwell on the bad ones, and let the good ones keep me above the shark tank below. Some days I get nipped in the ass more than others. But I always seem to be able to stay just high enough. I'll be honest, there's a lot of self pity going on inside me. I try not to, but i'ts just part of the human genome I suppose. I rely on music a lot to buoy my spirits. I'm sure it would be much easier to deal with a bomb in your chest that was going to detonate in 2 years than the slow downhill slide of ALS. At least I would have the ability to enjoy my time left more fully. As it stands I seem to go through each day like a woodpecker on a dead tree. Searching, pecking, looking for something worthwhile to get me through the day. Typically the kids are the ones that give me sustanance. I'm not sure they entirely understand  what my future holds. Sadye still makes me get well cards. I need to somehow begin to prepare them for life without Dad. They have already lost the physical me, maybe that will make the rest easier.?.  I never thought my kids would be raised by a single parent. That always happens to someone else. Leslie will do a great job, but it will be hard I'm sure. It's hard being ''that guy''. I really hate it. Being pitied, prayed for, an inspiration. I really don't feel inspirational lying here in bed at 4 a.m. typing this. But I guess it's my plight in life. My cross to bear. I don't know what I'll be remembered for or as. As time passes, maybe people will forget about my physical decay and remember me before ALS. For some strange reason thats how I still see myself.... until I see a picture. That is still not something I'm comfortable seeing. Vanity, the trappings of being human I suppose. 
Never Give Up and Cure f*-#ing ALS, 

CurtPosted: 9-26-11, from Curt

I'm sure everybody probably has a different thought on what thing I've lost that I miss the most. Most probably think walking, or eating, or breathing. All big things for sure. And I do miss them terribly, but the thing I miss most are my senses. Not common sense, I've never had that. I mean taste, touch, and scent. I can still hear and see, as long as I don't have to turn my head, and I can feel if someone touches me. But I can't touch anything because I can't move. Can't pet a dog, comb my daughters hair, feel the bumps on an ear of corn, feel my childrens heartbeat when I hold them tight. It truly does make me a prisoner in my own body. Relish all your senses. I rely on my memories now. I will lie in bed and have a basket of fries, dipping them in a ketchup/mayo mixture and wash them down with a pint of Oberon. I am distracted by the tastes of these though because I am looking forward to the Harrison Roadhouse chicken sandwich I'm waiting for. It is a battered and fried chicken breast covered in melted cheddar cheese, layered in bacon, and served on a kaiser bun. Truly magnificent. And only 100 calories......... per bite. Other favorite delights are found at ElEzTeco, Charli Kangs, P. F. Changs, Outback, Crunchies, Spagnuola's, Art's Bar, Peanut Barrell, Jet's Pizza, and Bell's Pizza. Occasionally if I'm in a hurry McDonalds, B K, Wendys, or KFC. in a pinch I will even make something at home. I will remember all the steps in making a bologna or PBJ sandwich and then eat it bite by bite.

My friend Brian Stacey understands my plight. On a few occasions, I have asked him to try a new product for me and report back. The DQ commercial for the new Nutter Butter flurry was driving me mad. Brian sent a review and a picture. I could see the condensation running down the side of the cup. My only complaint...... he got a small. Now that is a true friend. I almost could sense a brain freeze.

All the smells are gone too. Fresh cut grass, the air after a good rain, fall leaves, Sadyes farts, food cooking, gasoline, brand new plastic, fresh cut cedar or oak, a bonfire, and on and on. Many scents trigger a memory. I have to work in reverse. It's not as good. And yes you do miss almost all the smells. Good or bad. I can't even smell my own BO. So I apologize if you visit and I have some. Although my wife is pretty fastidious  at keeping me cleaned up.

I have kind of gone through phases, missing certain things for a period of time, and then moving on. Now, it has pretty much settled on this. Missing everything all at once. Another thing related to the senses is my response to them. The physical response you make to stimuli is a great release. I'm not sure if it's chemical, physical, or some combination of the two, but I do know this. Be glad you have them. When we went and saw Hangover 2 at a theater, it was very funny. People were howling with laughter. I had on my usual poker face. Even smiling would have been a godsend. I've mentioned before that I can't cry. That is very tough to handle. I feel as though there is a big ball of emotions stuck inside, waiting to explode. Yelling is a great release. Letting a string of profanities fly out of your mouth at an elevated tone every once in a while feels great.  Admit it. Thinking it does next to nothing.  This shitty, fucked up, bullshit disease fucks with your damn life from every fucking direction..........  nothing. Still feel the same. *&#$!  The only good thing is I can't yell at the kids.

I imagine wherever I end up after ALS has finished fucking with me, I will be a babbling, laughing, crying basket case of emotions. Hopefully they won't have loony bins there, for I will surely be placed inside.  50% of PALS (people w/ ALS) can experience uncontrollable, inappropriate outbursts of laughter or crying. Which would be worse?? Who knows. They'd both suck. Let it out if your able. Don't be afraid to show your emotions. That's why you have them. Laugh, cry, yell. It's what makes you you.
Sorry for all the rambling lately. Theses posts may not make much sense and I tend to rattle on, be repetitve, or go off on tangents. I think they help chip away at that ball stuck inside me. I guess in summation, embrace your senses. They are a wonderful thing. Eat in moderation, but do not be limited on what you eat. Try everything. Let it all out. Try not to fart in church, or laugh at a funeral (unless its mine, I would love to see smiles and hear laughter at mine), but don't try to hide your emotions; they're a gift. Even if you snort when you laugh or your makeup runs when you cry. And if you see me, or know or meet someone in a similar situation, don't be afraid to touch me. Lift up my hand and shake it. Sit down and hold my hand. Anything. Feels great to feel human touch. Just watch the head though. Kisses are acceptable, just try not to move my head, it messes with the camera alignment and then I can't talk. I think my wife purposefully does this sometimes. It's a great way to win an argument. 
Never Give Up, and Cure Fucking ALS, 

CurtPosted: 9-25-11, from Curt

I remember as a kid thinking of the year 2000 being a futuristic place. Flying cars, 3 course meals in a pill, living in space, and laser guns. TV and movies bolstered these daydreams into a certain future reality. I don't know about you, but I don't remember flying to work lately or popping a 3 course meal into my mouth and washing down with a glass of water. I also remember thinking how ancient I'd be. 32! Boy I'd take being 32 again in a heartbeat. I guess it's all about perspective. From where I'm sitting, literally, just about any other reality looks good to me. When things are going good enough in your life, its easy to just cruise along, turn on the cruise control. Enjoy the ride. When I look back on my life I feel that is what I did. Just coasted along. Didn't rock the boat. I was a jack of all trades, master of none. I think now that when things are going good, it is a perfect time to take a risk, try something new. I feel humbled by  all the support I have received  over the past few years. I can't remember ever having helped anyone in that way. I challenge you to step out of a shell every once in a while. Visit the sick or elderly, volunteer, make sure all those close to you know that you love them. I will never have a chance to do that. Bums me out. Life is messy. It requires alot of work. Get your hands dirty and squeeze all you can out of it. I sure wish I would've done more squeezing. 
Never Give Up,  and Cure ALS, 

 CurtPosted: 9-22-11, from Curt

Just when I thought everything was going so well at school, Sadye proclaimed there was something she hated at school. She held out her hands and explained how the monkey bars were giving her blisters. ''and I'm addicted to them, dad, I just can't stop. ''  I told her to try to take the edge off by using the swings for a few days, because I don't think they make a gum or patch to curb monkey bar cravings. She retorted,  ''well,  I guess I can give it a try and see what happens. '' Sadye is destined to be an actress. Constantly overdramatic in nearly everything she does or says. Most of the funniest things she says aren't hilarious because of what she says, but how she says it. Hands on hips, face all contorted. Being the youngest she feels she needs to be loudest or most animated to get attention. This does not make for a quiet peaceful household. Not being able to yell at and chase down the kids for their transgressions makes it easier for me to appreciate them easier, and harder on Leslie because she's always stuck being ''the warden''. Yes, I do punish them, chastise them for their wrongs, and  try and explain to them what their correct behavior should be. But being stuck in a wheelchair and speaking in a monotone robotic voice do not lend themselves to doing it very effectively. Their minds are whirling along at the speed of light, and it wears on their patience to stand in one place and listen to me slowly type out whatever it is I'm trying to say.   Being a paralyzed, mute, machine dependant parent and husband isn't as easy as it sounds, and I'm sure it sounds easy. Unfortunately just puts more pressure on everyone around me. We've tried to keep our family dynamic as it was before, but it is stressed and strained and bulging at the seams on most days. People are very complimentary of my wife and I on how we've handled all this, but the truth is we struggle to get through most days. So many things we wish we could do better or handle differently. It's equally hard on both of us everyday, just in different ways. When this has run its course I can only hope that Leslie is able regroup and move on. ALS will always leave a mark on her, I just hope that it isn't a hideous scar that steals any of her spirit. She has devoted herself to my well being over the past few years, and deserves some calm in her life. I am extremely lucky to be surrounded by people who love me, and because of my condition I am constantly reminded of it. Those people are also surrounding all of you. It may not be as evident when you are leading a 'normal' life, but if you reach out, you will find they are there. Just take the time to do so more often. 
Never Give Up and Cure ALS, 

CurtPosted: 9-20-11, from Curt

I would like to thank Stephanie Signs for organizing 'Curt's Convoy' again this year and raising $500 for the ALS Walk n Roll. Also thanks to the Bouck, Ensign, Fox, Huhn, Karber, Nunn, Signs, Slamka, Theis, Troub, and Whitman families for collecting donations ands participating in the walk. Quinn, Brantae, and Sadye were also there represnting the Luttig family. Good time had by all. 
Walk-n-Roll - Curt's Convoy 2011
I watched some home movies today. Boy someone really needs to work on a time machine. I think that one from Naoleon Dynamite would really work if you had the right crystal. if I could go back 12 years and do it all again.... I'd do it in a minute. Only better. Sleep is overated. It was 2005. 4 years till my D day. I was walking, talking, playing with kids in frontyard. Good times. Kids always yelling daddy, daddy, look at this. They hardly do that anymore. Usually run right over to Leslie now. Not purposefully. I'm sure it's natural to go to the parent who can give you a hug and talk to you. Eventually they come over to me. still a kick in the groin nonetheless. One thing I noticed is that Brantae, who is very good at softball now, was terrible back then. A real whiffer. The girls still acted the same. Running, dancing, singing. Quinn looked just like me at that age. When I was first diagnosed there was a flurry of emails with picture attachments sent amongst a dozen or more of my friends. Rude comments, photoshopping, and one liners were traded back and forth. A good time had by all. It was great to see. I would highly recommend contacting someone you think of often but never reach out to. It's good for the soul. As ALS slowly progressed I was somehow able to take it all in stride. Now that there is not much left of me it's getting harder to do. Seems like so long ago and yet like just yesterday, that I was normal. Haven't been thinking of food nearly as much. Not sure why. Plenty else filling up the brainwaves I guess.  Memory isn't as sharp as it used to be. Not supposed to be affected bt ALS. Probably a lack of stimulation.  Leaves are turning and falling. Probably the last time i'll see it happen. We have lots of walnut trees, which is a pain. Thousands of the little bastards cover the yard. Thank goodness we have 3 kids and no child labor laws. Now all we have to do is get them to actually do it. 
Never Give Up and Cure ALS, 

CurtPosted: 9-18-11, from Curt

I don't think I've ever broached the subject of religion in my posts. I feel religion is a personal relationship with God for each individual. I was raised Catholic and went school at St. Joes in St. Johns. I learned an appreciation of good and evil, heaven and hell, and a love of life. The biggest thing I learned, I believe, and the most important thing I hope my children learn is the difference between right and wrong, good and bad. I see far too many supposed Catholics that are perceived to be so because they go to church every Sunday and participate in all the sacraments. I have had plenty of periods in my life where I didn't go to church regularly, but I have always felt that I was a good Catholic or Christian. I treated others with respect, tried not to lie, didn't cheat or steal. I know some people who rarely go to church but are ten times the person as some regular church goers I know. I think when the time comes we need to be comfortable with who we are. Nobody is perfect. I know I'm not. I don't think there are many people out there with a negative opinion of me, but I know I've done wrong in my life. Made plenty of mistakes. I suppose I have the benefit of dying. Not too many people talk badly about the dying. Although some of my closest friends still call me an asshole or a 'little shit'.

I had the additional benefit of being raised by two wonderful parents. Most people don't know them very well. They tend to fly under the radar. A little quiet and not out running in social circles. I think you'd be hard pressed to find too many people with a bad opinion of them. The one thing I know I did right in this world and have very few regrets about, was being a father. I know where I got that from. I have always looked up to my dad. Always there for me. And he is as good as a grandpa as he is a father. I was really looking forward to having a chance at being a grandpa. But I'm not going to get a chance at that. Many  people saw a lot of my dad in me. And now I hear the same about people seeing me in my kids. Smart-ass is the most common comparison I hear. I was always worried about how I would handle losing my parents. Unfortunately, it is they that have to suffer the loss. I don't know how my kids will handle it. Our direct family is extremely healthy, they have never had to deal with any loss till I had to fuck that up. I'm sure they'll do fine. They have a strong loving mom that will pull them through. And they in turn will pull her through. Damn ALS has to leave such a wide path of destruction.

Back to God. I really haven't been doing much praying. Any praying I do is for my wife and kids. Won't do much good praying for myself. I would have had a better chance with pancreatic cancer or an inoperable brain tumor. At least miracles have been known to happen with those cases. I suppose there are some cases of living a long time with this disease, but my type moves swiftly and without remorse.  Not sure how long I would last as a completely immobile person anyway. I see cars go by and wonder where they are going. Wish it was me. Hear about things friends are doing and feel jealous of them. I occasionally will go out on trips to do something. But usually it just reminds me of how much I'm missing. How much I can't do. I try not to feel that way.  Turn lemons to lemonade, but it gets increasingly hard.  I guess I will finally get to finish the final sacrament of my catholic life soon enough. The last rights. I guess I had never really planned on following through on that one.  That's all in the future though. I remember being grateful to being given time to prepare for death when first diagnosed. Not as easy to feel that way now. It's a long gradual slide. Not as easy to get through as I thought. Endeavor to persevere. Thats sounds like a nice quote from a Clint Eastwood movie to end it on.
Never Give Up and Cure Fu*#ing ALS,


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