Updates Page 2

           CurtPosted: 1-06-12

My friends I see on a regular basis tell me they are often asked by others they run into out and about how I am doing. Well,  you might as well hear it from the horses mouth. Physically, the only 2 working parts I have left are still working. My heart and my eyes. I have no control over any of the voluntary muscles of my body. The involuntary muscles still plod along under the surface, unbeknownst to me they continue to do whatever it is they do.  It is pretty hard looking at your hand and not being able to move it. I suppose I have accepted or gotten used to being totally paralyzed. At least as much as one can expect. I still have complete feeling on every part of my body. This is both good and bad. Great to feel the touch of someone on your hand or arm, but not so great when your arm slips off the chair and hits the side of your wheelchair. Luckily this doesn't happen often. So my body is completely useless. It is merely a container to keep everything together. It would be great if it was like in the movies and my brain could live in a robots body or out in cyberspace. Although I'm sure that would have its drawbacks as well. I am doing the best that I can to keep my mental state from sliding as well, but that is a daily battle. I have tried to keep my sense of humor and sarcasm alive and well, but I believe they have started to wear down as well. Like a sharp stone slowly smoothed down by a constant flow of water, the Curt I used to be has slowly been washed away. What is left is not better, not worse, but just different. I have never been accused of thinking too much, but now my thoughts ricochet inside my head like popcorn in the microwave. Hard to escape the musings of life and death. All in all I'm hanging in there, fighting the good fight. I just take each day one at a time, try to focus on the positives and keep moving forward.  It just takes a lot more determination than before.

Yesterday we received some sad news. Leslie's mothers best friend Claudia passed away unexpectedly. She was very close to their family and will be deeply missed. I do not have a memory of Claudia that doesn't make me smile. From the first time I met her, she always made me feel welcome. At our wedding reception when they brought the cake out, Claudia had replaced the bride and groom on top of the cake with a pink haired troll doll bride and groom. Classic Claudia. Full of spirit and optimism, she was bright light that will be missed by many.

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

          CurtPosted: 1-04-12

When I was young I used to wish upon a star,
For millions of dollars,
Or a brand new car.

But now that I am older,
And have ALS,
It seems my wishes have changed,
From my new perspective I guess.

For now I wish that I could talk,
Or hold my childrens hands,
Or possibly even walk.

I crave the taste of burgers,
All covered with bacon, ketchup, mayo, and cheese,
Washed down with a strawberry shake,
And dutch apple pie pretty please.

I wish I could smile, laugh, and cry,
For all these emotions are stuck inside
A cacophony of echoes ringing in my head
my computerized voice is my only way to try.

I have stopped wishing,
now I only hope
I hope my family will be ok when I'm gone,
and that my children will be able to cope.

Lifes too short for wishing
you gotta grab ahold while you can
you don't want to miss whats right in front of you
gotta live your life while you still can

         CurtPosted: 12-31-11

What exactly is Christmas? Everyone has a different experience with Christmas. Some focus on the religious aspect of the birth of Christ. Others treat it more like a commercial holiday. Throughout my life there seemed to be transitions to different experiences with Christmas. I'm sure they are very similar to your's. When I was young, it was all about the presents. I had an understanding of the religious meaning of Christmas, but that was hard to compete with G.I. Joe with kung fu grip, or Evel Knievel stunt cycle. As a kid it meant being forced by parents to pose for pictures and quelling the urge to ransack the house in search of presents. In the beginning you never questioned the reality of Santa Claus. Why would you? Then comes the doubts by some friends. You hear rumors that parents are somehow involved. How could that be? Eventually the gig is up and your parents spill the beans. I don't recall being told. Maybe for some it was an Ah Hah moment. Not for me. That's when it starts to get interesting.  Now that you know who's behind the presents you start to hatch a plan. Innocent comments about how your friend Brian has all the Star Wars action figures, or that Mike has a sweet new sled. Always leaving the Sears catalogue open to a certain toy page. Even things as obvious as loudly commenting about how cool something looks in a TV commercial. I remember this being a bittersweet time. The innocence of youth being left behind. Christmas had lost that twinge of excitement wonder, but the presents were still excellent. Then came the dreaded clothing phase. 2 out of 3 presents were clothing. Since when were socks and underwear considered a gift.?.? In high school and college giving presents suddenly became more important than receiving them. Maybe a little something for someone special?.  Eventually you have a family and the whole thing turns around on you. Suddenly the magic is back, but instead of feeling it yourself, you see it in your children's eyes. This is more work but definitely adds a lot more enjoyment to the season. I always loved going out and buying presents. Selfishly I admit I bought things that I thought looked fun to play with. Our kids would circle nearly everything in the circulars and toy magazines that came to our house. As they got older they started cutting out pictures of toys and gluing them to an official present list. The final advancement in their strategy was making lists on the computer and emailing us attachments with pictures. We have 2 believers still left in the house. I always had the philosophy, you must believe to receive. I guess we will bend the rules a little now. Last Christmas and this Christmas were quite different for us as a family. Future Christmases won't be the same either. I guess you just get out of it whatever you can. For me all my enjoyment came from watching the kids tearing into presents and eating sweets. I guess the older you get your priorities change. No more wrapping presents, putting together toys, eating Christmas cookies for breakfast, or taking down the Christmas tree. All melancholy moments to watch but not participate in. The best 2 presents I received are shown below this post. Much better than receiving socks, underwear, or a fancy Lexus automobile with a big red ribbon that everyone is apparently getting this year. 


We love you daddy, 
you make the world non-crabby. 

You are funny in a good way, 
you tell us jokes throughout the day! 

I wish you could get up and play, 
but at least the world is not dull and grey! 

I hope you know that we love you, 
even though you touched bird poo! 

We love you, don't worry I've touched bird poo too. 
Merry Christmas
Brantae Luttig

To daddy'o, a poem from Sadye

Some poppa's are big,
some poppa's  are small,
but this poppa's the best
of them all. His family knows
he loves them, they feel it
all day long. His hearts so
big, his spirits so strong, 
he knows we all love him
like burgers, he's fueled 
by burgers, and he can do
no wrong, but you just
have to know one thing
and that is we love you!! 

Your the best dad ever, we love you Merry Christmas


Never Give Up and Cure Fu@\&ng ALS,

        CurtPosted: 12-21-11

About 12 years ago I had a piece of food get stuck in my throat. I could still breathe but the food would not go down. I tried drinking water to wash it down, but it wouldn't pass the obstruction and I had to spit it out. After about 15 minutes it finally worked its way down. This happened a few more times over the year, so I went to an ear nose and throat Dr. and had some testing done. Nothing. This just became an anomaly that would occur a few times a year. I chewed up my food more carefully (it always occurred when eating meat ), and took it as just one of the excentricities of being Curt. Approximately 6 years ago, I noticed that when swimming under water my chest felt like it was being compressed. I passed it off as being part of my allergies and slight asthma. If hindsight were foresight, we'd have 20/20 vision. I look back at this and wonder if ALS was just beginning to slowly rear it's ugly head.? There's no way of knowing. If It was and I had known there is nothing that could've been done. Just added more worry to my life. I just thank my lucky stars that if it was ALS, that it stopped. No matter how bad it seems, it could always be worse. I have to remind myself that sometimes.

My youngest Sadye had basketball practiice last week and when she got home she ran into the bedroom to give me her daily report. Sadye is the only one of our kids I never got a chance to coach. She said coach Karber had challenged the players with a bet. He said if he missed a shot from halfcourt, he would run 8 laps. If he made it, the girls would run the 8 laps. he did this 3 times during practice. Needless to say, Sadye said Coach Karber was very tired after practice. He had to run all 24 laps. I told Sadye she was lucky that I wasn't her coach because the kids would have been the ones running all 24 laps. Without missing a beat, she replied, thats ok daddy, I would've run all those laps happily if you were able to be there. Amazing how a few little words can mean so much.. Happy Holidays everyone, and enjoy all the special little moments with your family.

Never Give Up, and Cure F)(+@ng ALS,

       CurtPosted: 12-13-11

Dreams are a means of escape from the complexities of everyday life. Sometimes they may be a bit bizarre or nonsensical, but usually relate a little bit of life paired with  the fantasy world of dreams. During the process of ALS, I have somehow been able to keep my mind above the fray. I haven't needed medication for depression, did not come down with PBA, which brings on uncontrollable and inappropriate bouts of laughter or crying, nor have I had suicidal thoughts. Although, if I did I am not quite sure how I would follow through with it. Possibly by calling 911 on my computer and telling the paramedics when they came I was bitten by a rattlesnake and needed anti venom. I'm sure John Sanford, Michael Connelly or  James Patterson could come up with a credible scenario. I won't bother thinking about it. But it seems that ALS has begun to set its teeth in my psyche as well now. Sometimes I will awaken from a dream thinking I had typed something out and the screen is blank. Upon further inspection into my dreams, I noticed that I don't speak anymore in them. Nor do I walk, run,  or eat. I sometimes feel myself floating and tumbling through the air unable to stop. Or falling from an upright position, unable to catch my fall. So apparently, I can't escape ALS in my dreams now either. That sucks. In the beginning I always believed it would stop progressing, or maybe just happen slower. No such luck. It has been moving along at a pretty good pace and showing no signs of relenting. I never held my breath for a cure. Not for me anyway. Hopefully soon for others. They never scratched the surface for 100 years, but are finally starting to understand the process but not the trigger. I would blame it on the suspicious McRib sandwich that pops up every few years at McDonalds, but I was never desperate enough to try one. I would write more updates but am running out of any words of wisdom. I sometimes feel like I prattle on, repeating myself. I am not looking for anyones pity in writing these. Just trying to give an honest perspective on what goes through a person's mind when their back is against the wall and the clock is ticking.  If anyone has anything particular to ask, feel free to email me. Not sure who reads this anyway. I don't think I've used any of the trigger words like bomb or hydro-sulfur chloride, so the FBI isn't listening. Shit!  Now they are. So be it.

Been to quite a few of the kids basketball games, they are loving it. What games I can't get to Jason Gnegy, one of Brantae's teammates dads, has set up a dropbox with videos of the games for parents to watch. Extremely cool of him to do. Ok, eyes are running out of juice, time to sign off.
Enjoy your dreams tonight.
Never Give Up and Cure F+$#&ng ALS,

      CurtPosted: 12-09-11

This past weekend Kerry Bendelee organized a group of festive folks to participate in the St Johns Santa parade as a walking float entry. The theme they chose was Disney characters. In case you didn't know, Kerry has quite a cache of outfits for Halloween. So they divvied them up, and entered the parade. Their main goal was to win a $250 prize to donate to our family to help us out through the holidays. And just as they had planned, they won!!  They had characters ranging from a buxom Sleeping Beauty to a Toy Story army man. We cannot thank Kerry and her cohorts enough for their thoughtfulness and dedication. I personally think Kerry can't overlook an opportunity to get her husband Steve all dressed up in a fancy costume. Once again this shows how the human spirit can rise above and help those around us while still having a little fun. We have never asked anyone for help, never had to. It was always offered with a smile and a kind word. I admit it is hard for us to accept the outpouring of kindness that is sent our way, sometimes it is overwhelming. But I've learned to accept that in a situation when someone feels helpless seeing what another is going through, you need to allow them to do something that takes away the helpless feeling and gives them a sense of empowerment that they have done what they can to help. There are many more people out there in much greater need than us, I can only hope that they also gain support from their communities.

Never Give Up, and Cure F}{^@ng ALS,
Curt, Leslie, Quinn, Brantae, and Sadye

     CurtPosted: 12-07-11

A few weeks ago we had some of our closest friends over for a little party. Surprisingly, everyone we invited came. That doesn't always happen with the complexities of family schedules and such. it was an amazing afternoon spent eating, drinking and reminiscing. Many of the stories had been told before, but they seem to get better with age. It was a mix of people who I've known for 35 years, 15 years,  and even just 7 years. The common thread they all had was a unity in supporting us every step of our journey through ALS. Phone calls, favors, rides, donations, organizing fund raisers, emails, sympathetic ears, kind words and prayers. These  are the things that are all offered to us no questions asked. That is what makes their friendships so special. It comforts me greatly to know that when I am gone, they will all still be here lending whatever support is necessary. There are pictures of the party and the great cake Erika Karber made for us here on the website. The cake represented my typical diet. Sometimes for a snack, or dinner, and yes even occasionally for breakfast. I believe Erika charged us extra for the bit of profanity on cake, but it was worth it. We had the party because I never know when I may have some complication or another, and I wanted a chance to see everyone together, enjoying each others company, and selfishly so I had a chance to talk with all of them also. It was a great day.

Never Give Up and Cure Fu@\&ng ALS,

    CurtPosted: 11-23-11

I'm not sure why I didn't weigh 200 lbs., because I sure loved to eat. At times it is the worst part of this disease. Constant commercials on TV, and all gatherings centered around a meal of some sort. This will be a difficult stretch of year to get through for me. Halloween, Thanksgiving, Christmas, and New Years. All holidays based on the consumption of food and alcohol. My favorite time of year. My advice to you. Take it all in and enjoy it. Calories, fat content and grease. Who cares. If it looks good, tastes good and smells good. Eat it. Tis' the season. I had been known to eat all of the candy canes off the tree. Not sure what it was about them, but I loved them. Then we had kids. Competition. I would try to hang them high on the tree to keep them out of the reach of their sticky little fingers but they would just use chairs to get at them. Undaunted, I just decided to buy more and keep reloading the tree. Worked perfect. Apparently my affinity for the sugary delights was not a secret. One Christmas I received a box full of candy canes from Leslie's eccentric Grandma Ditty. Elated I dove right in and started eating one. Now I would have thought a candy cane had a shelf life of 10 years or so, and if that was the case, then these had been on the shelf at least 20 years. As I smiled and choked it down, I wondered how I was going to get around having to eat another one. Luckily, they looked identical to the ones on the tree. I simply pulled a switchero. Ditty always seemed to give the most memorable presents. Usually with her own personal flair infused in them. For quite a few years we would receive t-shirts that were bedazzled with glitter, shells and pictures of kittens. The most interesting thing was they were always in a boys large size. Never got a chance to get one of them on. that would have made a great family portrait. Holiday memories are a great thing to have. We all have them. It is a great time for families and friends to get together. Hopefully my children will have great Holiday memories involving me. I'm not sure if they are old enough to have memories of me when they get older. I do know that we have videos of every Christmas they will be able to see. I am usually in the background, armed with batteries, scissors and wire cutters trying to free their toys from their wire and plastic sarcophagus'. I hope everyone has a great Thanksgiving and go back for seconds for me.

Never Give Up and Cure F*+-@ng ALS

   CurtPosted: 11-22-11

Thanksgiving. Notice it's not called Thankstaking, yet that seems to be what it's all about. We gather for a feast that is usually cooked by a select few, we eat until we have to undo the top button in our pants or God forbid take off our belt. Then we saunter over to the couch and plop down and turn on the TV. Granted, the cookers are   usually also the cleaners. Some will ask once in a soft, hesitant voice, ''can I help? '', which is either unheard or dismissed with a, ''that's OK''. To which they scamper away from the kitchen. I am sorry to say that more times than not I was one of the soft spoken ones, lounging about, counting the time until I felt it was OK to attempt a trip to the kitchen for a plate of leftovers. Like a phoenix, I would arise from the couch for another dose of tryptophan to induce another hibernation state to be carried out on a nearby couch. Admit it. This is either you or someone you know. The cookers are a rare breed. Usually one per family with a small crew of helpers. The loungers are everywhere. Like cockroaches in the dark, they are in abundance. But when you turn on the light (ask for help) they evaporate. Nowhere to be seen. Unfortunately I can be neither a cooker or a lounger now. I am an observer. Forced to live vicariously through those around me.

Leslie and I helped deliver turkey dinners one year for a friends church. I thought about that every Thanksgiving, but never did it again. I'm not sure why. It felt great doing it. Gave me a real sense of  self worth. Two things I remember most about that day were the smiles on their faces in anticipation of cooking up their feast. And secondly how so many people in obvious poverty always seemed to have a satellite dish on their  roof and a multitude of alcohol containers and cigarette butts on their porches. We often talked about doing it again or taking our kids to help out at a soup kitchen to show them how good they have it and to feel that same sense of pride in helping our fellow man as I'd felt. But alas it never happened. I can't do any of it now. I write this as a reminder to all of you. You can start small by not offering, but just jumping in and doing the cleanup. Or maybe inviting a relative or neighbor who is all alone over to dinner or for dessert. Maybe offer a plate of leftovers. I'm sure there are organizations looking for help or donations. I guess I would sum it up by saying,  don't rely on your future to do good deeds for others. You may not get that chance. Make it a part of your daily life. and don't worry, they'll always be leftovers.
Never Give Up and Cure F#'@$£+g ALS,

  CurtPosted: 11-21-11

Destiny. What is it really? Is it a predestined future that is in store for each and every one of us, or rather a label that is applied at the end of our journey, when others look back at our life and try and make sense of it? Was it my destiny to develop ALS? I don't think so. It was a ticking bomb inside of me. What was the trigger? Nobody knows yet, but it could've gone off when I was 16, 25, or 80. The latter would've been nice but the others tragic. I got the chance to have a decent life. Much more than many, much less than others. I always envisioned being a grandpa, being retired, and never thought death would catch me. I lost a friend in high school. He never got the chance to do many of the things I did. Was that his destiny. Hell no. It was a senseless act that stole his life. I think our destiny is what we try and make it. Occasionally unforeseen roadblocks and detours alter our course. But ultimately, we get to choose how we deal with these and what our course is. Some choose to live their life like a rudderless boat and let the currents take them where it may. Others set their sights on a speck in the horizon and fight light like hell to get there. My life had serendipitous route. I was neither rudderless nor fixed. A microbiology major who started his own remodeling business. Just did my bit in life with no expectations of grandeur. when I am gone there will be no parade or blotter on the bottom of your tv announcing my demise. But like the ripples in a pond my life and death will leave a lasting impression on those around me. I never realized that until I saw the support I had around me. Some unseen while others have been beside me all along. I hope my memory and friendship will be a positive influence and not a source of sadness. I never set out to do anything special with my life, but as I look back at it now I was part of something special. Better than anything I could've achieved on my own. Family and a group of friends that it took a lifetime to gather. And when I'm gone, I will be remembered, and my son and daughters will bring a part of me to the future. Now was that my destiny? Hell if I know. But I do know I couldn't have done much better if I'd tried.

Never Give Up and Cure Fu&#+ng ALS,

Posted: 11-11-11

Friendship is a wonderful thing. It is something you can search for and find. It is also something that is given when not asked for, or even stumbled upon when you are least expecting it. My whole life I have been blessed with great friendships. In the neighborhood I grew up in, my elementary school years, junior high and high school, college, my professional life, and even now in the last chapter of my life.  Some friends have transitioned through all these phases of my life, while others have offered their friendships without ever having met. One common thing is they all turned up when I needed them most. Through emails, cards, visits, support at benefits, etc., they all lended support in any way they could. Occassionally on a bad day, I might receive an email that would turn my day around. This has happened many times. Reconnecting with friends from the past has been both introspective and reassuring. I have been told that my ramblings on these posts have inspired or helped those reading them. I'm not so sure about that. It is merely a means of therapy for all the thoughts ricocheting around my head. They are things that everyone knows, my vision just isn't obscured by the trappings of a busy life. I have been been told that I was thought of as hero by a few people. That is a concept beyond my grasp. I am totally dependent on others for everything. I am a blown fuse away from a journey to the heavens. The true heroes are all those surrounding me, carrying me. If not for them there would be no me. They know who they are, I needn't name them. I guess there is a little hero in all of us.

Never Give Up and Cure F@#&+ng ALS,

   CurtPosted: 11-9-11

Rich, Curt, Cindy, Cheryl and EricI was getting a little long winded on my last post and started going cross eyed (sarcasm). One draw back to txt, email, and my computer voice is there is no way to denote sarcasm. And for me, it's my native tongue. I had a bit more on my mind when I was writing that post. As we go through life we pick up different mentors, or people who greatly influence our lives. Some we absorb what bits we need and discard them, while others remain in our lives forever. Among the many influences I've had in my life, there have been 4 that have remained with me over nearly the last 30 years. Since junior high we have formed a friendship that is neither tethered nor strained.  I suppose we were drawn together by similar likes and dislikes. We were all involved in sports and did well in school. There was no dramatic movie moment, at least not one that we can remember. We just started hanging out. Eric, Rich, Curt, Cindy,  and Cheryl. We could be seen  driving around in Eric's pea green Malibu, hitting McDonalds, The Wheel Inn, or downtown. We painted our faces and went to Cindy and Cheryls sporting events, they came and watched our games, unpainted but cheering. We went to Homecoming, Prom and Morps together. We didn't drink, do drugs or party. Rather than that, we watched movies, toilet papered, played games, hung out, and enjoyed each others company. Our biggest worries were gas money and how much longer Erics's Malibu would hold out. Without really knowing it, I think we were all mentors to each other. We respected and liked each other, and I guess even looked up to each other. College and life slowly separated us, but we still kept in contact and kept tabs on each other. When we did get together, it was as comfortable as an old pair of jeans, as if time had never passed. And over the past few years, ALS has brought us all back together. They have supported me with their friendship, emails, visits. Hopefully when this is over, they will still talk or see each other more frequently than before. If so, it will be one of the few good things to come of it.  I steal this line from Eric. He wrote it on the back of a photo of us on the rocky lakeshore in Chicago. I can't get up and find it to read verbatim, but in summation, "Thank you for being my friends. I am a better person for having you in my life." Over the past few years, all five of us have expressed that we could only hope our own children will find a circle of friends that was as special as ours.

Never Give Up and Cure F#@&-ng ALS,

  CurtPosted: 11-1-11

When I was growing up I remember only having a few a role models. Unlike a lot of today's youth, I didn't look up to professional athletes or celebrities. I think TV and the entertainment industry has made them into something they are not. The people I looked up to lived right in my own house. I looked up to my dad and older brother Ernie. My father was everything I would strive to be when I grew up. He was honest, hard working, respectful, loving, family oriented, and a smart-ass.  I probably came closest to duplicating that last one, though I tried to live up to the other ones as well. There are a lot of people who put work first in their lives. My business surely would have been more successful had I subscribed to that notion, but my motto was always ''i work to live, not live to work.'' Work was a necessary evil, for everything a family needs. I think I learned this from my dad. He always was working overtime in the winters so he could take weeks off in the summer for family vacations. He always coached my little league teams, and I don't remember him missing any of my sporting events. That is something a lot of people just don't understand. Life is full of choices. Nobody can force you to do anything. Either you make family a priority or you don't. It's too bad more people don't make the right choice. I loved coaching my kids sporting teams. I could never understand why some parents wanted absolutely nothing to do with it.

I suppose most people look up to their older siblings, so I was no different. My brother was 8 years older than me so I was probably considered a tagalong by him but I don't remember being told so. Ernie was really into sports. So guess who else was really into sports. I'm sure it can't be solely attributed to him, there were other reasons for it as well. I remember losing to him in horse, around the world and free throws. I really thought I was going to be able to take him in free throws at least once. No such luck. I remember one occasion I thought I had him. I made 26 in a row. Well,  I don't remember the exact number he made, but it was in the 60's. He had a laid back easy going attitude, much like myself. I really appreciated having a brother like him in my life. And he's still there. Been by my side through this whole ordeal. 

I know some people aren't as lucky to have a strong family support group. That's where teachers, coaches and friends come in. Anybody with good morals, a little time and compassion can do it. You are probably unaware of it, but I'm sure you are having a positive impact on someone's life. I was told over the past few years that I was looked up to by a few people when I was on the varsity basketball team. I was both grateful and surprised at being told this. When I was freshman, at the end of the season, my coach told me I might want to try another sport because I wouldn't make the JV team the next year. I don't really remember being bothered by it then. Looking back I am both grateful he said it and disappointed a coach would say that to a student. Undeterred, I was the starting guard on the JV team and played 2 years on varsity, starting my senior year. I was just being me. Didn't think I was doing anything special. In my demented mind I always felt confident on an athletic field. Even though I was typically the smallest one on it. I was told by someone that was 4 years younger than I, that along the way he was looking up to me. Watched me on the court, in school. He even chose his number in basketball to match mine. Number 12. Now I was nothing special. Wasn't all state or valedictorian. But I tried to do the right thing, was kind to others, and worked hard. Just by being the best person I could be, I had a positive effect on someone. That kind of thing is happening everyday. I was really glad he shared that story with me. It wasn't easy for him to say, but it sure had a huge impact on me. Gave me a sense of pride and self worth. Something that isn't easy to come by sitting in my chair drooling all day. 

I guess that the one thing I hope my children will gain from remembering me is to never give up. To endeavor to persevere, try hard, and live their lives to the fullest. I won't be here for them to look up to or to lead by example. But I am confident they will find others in our community to show them the way. I leave behind me plenty of friends and family that will step in to help when needed. I also know that there are others who will positively influence them without ever even knowing it. Just like I did. 

Never Give Up and Cure F&-. *ng ALS, 

 CurtPosted: 10-30-11

Saturday night there was a Halloween Party and Benefit held for us in St. Johns at the K of C Hall. Erika Karber was the backbone of this event (along with her husband, Ryan, who would email me often as Erika worked her magic), and they got it rolling as soon as people started asking if they were going to have another party this year.  Mention something to Erika, and she is on top of it, along with so many other people from our community.  What it takes to put such an event together, really does leave me speechless.  Cindy Glowacki entered the hall with an arsenal of decorations and a bunch of Halloween spirit. I know Lisa Suidgeest also pitched in many decorations as she has a love for Halloween, too.  The hall looked awesome and I am so thankful that we were able to attend this year. The work put into the decorations must have been tremendous. You can check out the photos; my descriptions would not do them justice. There were raffle items, food, music, treats, a graveyard, spider web, costume contests, and it was all fueled by jello shots!  There’s always something fun about getting a little buzz from those colorful, jiggly squares. I noticed Ross carrying a handful of them around -  must have been hungry/thirsty! We brought the kids along and they got a big kick out of it.  I'm sure they were a little surprised to see all the normally “responsible parents” of their friends’, in goofy costumes (ok, the costumes were AWESOME) and in a festive spirit. I wish I could've stayed all night, but my voice gave out. AKA, my battery for my computer went dead.  We thought everything got loaded into the van, but unfortunately, that one little element was left at home.  I guess that’s better than my vent battery going out though. It was so great seeing everyone have such a wonderful time. Young in spirit, young at heart! I could imagine them all heading down the street, trick or treat bag in hand, in search of a house that gave out the ever elusive full-sized candy bar. The only difference now is they had a bottle in their hand instead of a bag. But they were still looking for treats to eat. Friendship and generosity are such a great thing, and I know I have said it many times, but I want to remind you how grateful we are for all of the help, love and support that is shown to us.  This is a tough road to travel, and we couldn’t have done it alone. The best thing about the Halloween Party was that even though they were doing it to benefit our family, you could see all the enjoyment they were having participating in it. You could tell they really enjoyed each other’s company. That’s what life is all about. Sharing your life with other’s. Forming bonds that will stand the test of time. It's nice to know you aren't alone in this world. Although I can't interact with everyone as I would like to, people still came up and chatted with me, gave me their best wishes...... even got a handful of smooches. I enjoyed it tremendously! Thank you so much for your loving friendship.

Never Give Up and Cure F£$€ing ALS,


CurtPosted: 10-29-11
The following are three separate posts, written over the past few weeks.

The first thing I lost to ALS was my voice. I never particularly liked the way it sounded. It seemed quite nasally and ordinary. My laugh wasn't exactly the best either. But they were mine. it has been almost 2 years since I last spoke. The thought of it seems almost foreign to me. There was probably about a month where I had a mumbly language all of my own. Practically indesipherable. At some point I just kind of gave up. There is no particular day, or a last word I spoke, like they would portray in a movie. I hope I told Leslie or the kids I loved them. For a short period of time I had no voice. Hand signals,  head gestures and writing were my method of communication. Eventually my brother Ernie hooked me up with a Droid phone and I found a text to speech App. Eventually my hands began to weaken and the Eyegaze came into play. Each step of the way I never truly believed the next dominoe would fall. Ignorance is bliss. I guess that holds true in my situation. I was able to convince myself it wouldn't get any worse and so I was able to keep my sanity. Creative thinking helped me communicate through the first phase and technology took over from there. In bed, I had a doorbell I would ring with my finger if I was having trouble breathing or had to go to the bathroom.  At that point I could use my legs but couldn't get out of bed. Eventually I couldn't push the button with my finger, so we mounted the button to the foot of the bed. I'm sure you can guess what happened next. So Leslie than had to set the Eyegaze up everynight in bed. Necessity is the mother of invention. We just kept adjusting, changing tactics. We discovered that the only thing that stayed the same was that nothing ever stayed the same. This same evolution occurred in all facets of our lives. A gradual change in how we approached my medication, feeding, bathing, bathroom, transportation, mobility and numerous other small things. It is quite maddening looking back on it all. I am not sure how Leslie made it through all of it with a scrap of sanity. The further along it  went, the more baggage I became. Somehow we made it through. I won't even get into the insurance paperwork, medications and supplies. Now what? There isn't much more that can physically be taken away from me. We have reached a plateau for a while. What does this all mean? For one it shows Leslies dedication and determination in keeping me here. Secondly, having ALS sucks for all involved, and thirdly don't let all the trappings of life slow you down. There's a way around every obstacle life can throw at you. You just have to look for it. We aren't special. We're the same as anyone else, fighting our way, day by day. 

Never Give Up and Cure F *+@ing ALS, 


Everybody loves a party. Lately I've been having a party of my own. A pity party. I've let the bad build up so deep that it was emanating from my  pores. It encompassed my soul and overtook my thoughts. Granted, I have plenty of reason to feel like I do, but it isn't who I am. It is not the attitude or outlook that has guided me through life. When life gives you lemons you make lemonade. What do you do when life hands you s*#+? Lately I've been eating a s*#+ sandwich and smiling. I think what I should do is  pass on the s*#+ and see if theres anything else on the menu. You know the saying that theres always somebody worse off?  Well, it's almost always true. Even in my case. My situation sucks. Plenty of bad stuff going on in my body and mind. Everywhere I look it seems theres another plate with a s*#+ sandwich on it.  But  there are plenty of people with my same disease who couldn't afford a vent. So they died. Had no other option. Still others are put away in facilities, with no family, no visitors, no life. I have friends constantly emailing and visiting. A wife who has devoted her life to keeping me at home. Benefits raising money for us. Parents, brothers, sisters. I think I said this before, but forgot. I am the luckiest unlucky guy in the world.  It's hard sometimes to follow your own advice. It is the little things that make life worth living. I guess I just need to pay closer attention. 
Never Give Up,  and Cure Fu*&-+g ALS,

Have you ever had a bad day? You just feel emotionally drained and hollow at the end of the day. A good nights rest, and your good to go. Usually. The culmination of the past few years has seemed like one long bad day. And when I wake up in the morning, it's just a continuation of the day. You know how in movies, they fall asleep and wake up and it was all a dream? Well, it doesn't work. I tried. The realities of my life and death weigh heavily upon my shoulders. I have a view from the edge. I look behind me and see my past. I look ahead and all I see is emptiness. I look down and see my future. It is a steep slope, jagged edges and obstacles everywhere. This is the path I unwittingly chose, when I went on the vent and chose to fight this disease. It isn't a fair fight, and while I keep trying, I have lost every major battle. I am against a unrelentless competitor who seems to cheat. I'm not sure what hurts more. watching what it is doing to me, or watching what it is doing to those that love me. I will never truly know if I made the right choice to fight this. Everyone tells me I did, and occassionally I would agree, but I will never truly know. I will go to sleep tonight and hopefully I will wake up to a better day. Thats one thing ALS can't take away. Hope. 

Never Give Up,  and Cure F#'£€ing ALS,




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