Posted: 5-04-11, from Curt and Leslie
An email I received yesterday. Thank you Darren.
received 10:58 04/05/2011
Curt,
I just caught-up on your blog. I was speaking to Jose (Arnold) just minutes ago and we both commented on the fact that we hadn't visited the site in a few weeks.
I was caught off guard by your posts. Particularly the one about Brantae and her wish to trade places with you. What an incredible gesture for her to make. It must make you proud to know that you and Leslie have raised her in a way that this is something she would consider. Imagine how that impacts the way she sees others who struggle. What a great gift you've given the world by teaching her this type of compassion. You echo through her...the way she treats someone 15 years from now is going to be a direct result of what you've taught her over the past nine years...especially the past 18 months.
This seems a little late in coming, but I have to tell you that seeing your posts and knowing of your struggle with ALS is heartbreaking for me. Partly because we grew up together and went on to live in Akers Hall together, but partly because I know how much you wish to be with Leslie and the kids for decades and decades longer. But from a selfish perspective, your struggle is teaching me to be more circumspect about the inconsequential daily struggles I face and if someday I face a serious struggle, your actions over the past 18 months will be my guidepost. I guess my point here is that you should know that your life is being witnessed...the life you lived before ALS and the life you're living now...and it's having a impact on everyone I know.
Some of that impact is sadness, regret, and a wish that you never had to go through this horrible trauma. But much more of the impact is positive. Everyone I speak to is overwhelmed by the dignity and love with which you've maintain your relationships through this disease. And everyone, including me, is a better person for having witnessed the way you endure. Your life is being witnessed and your life is weaving itself into the fabric of the personalities of your family and friends. That is a gift so few people are ever able to give.
I want you to know that because of your dignity, when friends think of you they think of Curt...not ALS. And that is a great achievement borne out of your unwavering sense of humor and seemingly endless supply of understanding and patience in dealing with the life that you were thrown into 18 months ago.
I truly don't know how you do it. You are blessed with a rock hard spirit and a great family.
Well...I didn't start this e-mail thinking it would be so heavy ... but I want you to know that I'm glad we know one another. I am certainly getting the better end of that deal...!
Darren Posted: 4-11-11, by Curt
For all you Spartan fans out there I have a great story that will show you how MSU is about much more than sports and academics, it's about embracing life and all the challenges people face. I have written, and there are pictures on website, of the different practices and games we have been able to go to thanks to the great people at MSU. They seem to relish going out of their way to accomodate requests to view their facilities and personnel. In the past year, due to my illness, we get frequent deliveries from UPS. One of the drivers, Lee Greer, usually has our route and has always talked to Leslie and asked how we are doing. In the past I was always out front playing kickball, wiffleball, etc. with the kids and would wave at the passing drivers. I'm sure I had waved to him in the past. He went out of his way during the holidays to collect donations from fellow workers to help us buy presents, and collected autographs from all the MSU basketball players on a framed poster. All of this done from the goodness of his heart with no rewards expected. Although I am a little suspicious that he is doing it for my wives chocolate chip cookies. They seem to be quite addictive, as Ross Pope would attest. Lee has quite a connection with MSU. He knows better than I how the lives of people can be affected by the simplest gestures, given only with intention of brightening someone's day. Everyone is always telling us how incredible we are at dealing with our daily struggles. The truth is we are just like everyone else. When you are backed into a corner, you try and fight your way out. When everything is going good, it's easy to do the right thing. It's a little harder when the chips are down. The smallest gestures can turn peoples lives around. It doesnt require money, or even much effort. Smile at someone having a bad day. Tell someone they look nice. Go outside and play with your kids even though you have some work to do. Watch this video and try and take the spirit it carries into every day of your life.
Never give up and cure ALS,
Curt
Posted: 3-31-11, by Curt
it is impossible to control the thoughts and actions of others. You can think that you know how someone will react to certain situations, but you never really know. A few weeks ago my daughter Brantae told my wife that she wished she could trade places with me. She said that she would be able to still be happy. I know my kids love me, but I was a little surprised to hear this coming from a 9 year old. It makes me proud that she would think of doing something so selfless, but also horrified at the thought of her going through what I am. The same can be said for my wife. She has dedicated her life to keeping me around as long as I can be. Every day I get to see the kids come home from school is because of her. I hold on to the hope that someday they will find a cure, it will be too late for me, but the thought of my or your kids possibly being afflicted is unbearable.
Submitted by Leslie, March 23, 2011
Hello Again,
For those of you who want to communicate with Curt directly, please email him at his address on his Eyegaze so that he can reply to you. That email address is curteluttig@gmail.com He checks it often, as it gives him something to do, so if you have any free time in your day send him a message. I know he would enjoy hearing from all of you.
Love and Cure ALS, Leslie
Submitted by Leslie, March 22, 2011
Hello, amyotrophic lateral sclerosis (ALS) or motor neuron disease, sometimes called Lou Gehrig's disease, degenerative disease that affects motor neurons in the brain and spinal cord, preventing them from sending impulses to the muscles. The muscles atrophy quickly, causing weakness, paralysis, and eventual death, usually when the muscles that control respiration fail. The intellect, eye motion, and bladder control are not affected. ALS sometimes originates in the brain, causing initial symptoms such as difficulty in swallowing or talking; in other cases it originates in the spinal cord, causing initial symptoms such as weakness in the extremities. About 10% of ALS cases are hereditary. ALS usually develops after age 40; more men are affected than women.
It has been such a long time since I have written, and even though I am faced constantly with what our family is going through, putting it down in words makes it even more real. Currently it has now been one year and three months since Curt's diagnosis. Last year at this time, he was still working, driving, walking, breathing on his own and getting used to a feeding tube. One year later, he is unable to move, is completely immobile, and is on a ventilator 24 hours a day. In a year's time, he has become a prisoner in his own body, looking out at the world, wanting to participate, but can't. As mentioned in one of my previous updates he does have his Eyegaze Computer that enables him to communicate with his family and others, but even with that, often a conversation will jump from one thing to the next and it is hard for him to keep up with what is being said. Granted, he still gets things said and has a great sense of humor, but I know inside it must be tearing him apart.
The world outside us keeps moving forward - as it should. I recently briefly had a conversation with an acquaintance at our children's school and was asked, "Is Curt still working?" I must admit that this surprised me, but given that fact that many people have not seen Curt nor really know what ALS does to someone, the question was reasonable. I explained how Curt was unable to work after last spring and was now completely confined to his home hospital bed or wheelchair. I don't think many people really understand what happens to someone with ALS unless you came and took care of Curt for an entire day. It's tiring and it's difficult and I am often told that people do not know how I do it. Well, I'm not going to not do it. He's my husband, and he needs me, and I need him, and the kids need him. I have learned to survive on very little sleep, but with that comes more grumpiness. But, he needs me, and if grumpiness comes with it, then we will just have to deal with that part of it. Many people say that they admire us or our strength and so often I hear that. But wouldn't you do the same for your loved one if you were in this position? I know people have said that they are happy to see me smiling when I am out somewhere, but what they don't know, is that when I am in the van driving alone, I am often crying, because when I am alone, I am given the time to think.
Our days are so different from what they used to be. Mornings are full, as it takes quite some time to get Curt cleaned up in the morning, get him from his bed to his wheelchair, and continue his care throughout the day. We have a Trixie Lift that enables me to lift him, but even getting the sling under his heavy, limp body, is very strenuous. And nights are full of suctioning, adjusting his body for comfort, wiping his eyes, etc. Some nights he may call for me via our wireless doorbell which is attached to the foot of his bed (he still has some foot movement to ring it thank goodness!) every hour of the night. Other nights, it may be only once. There's no schedule, no planning...I just am on call. For Curt, he can not move his body to get comfortable. If there is a crease in his sheets, it can cause discomfort which can lead to a bed sore. If he has something in his eye, he can't wipe it. If his skin is itchy, he can't itch it. If he is in pain, he can't call out. The Eyegaze helps me to communicate with him, but if you were to be near Curt without it, all of the things I have listed he may be needing, but you would never know by the look on his face what was needed or what he was feeling because his facial expression remains the same. He could be yelling inside, "I need you to move my leg, please" but you would never know that. More than not, we as individuals, take our daily simple movements for granted, but try to place yourself in his position...a prisoner in his own body...unable to do anything. And that's where I come in. I try to be there - the best that I can. And I have taken slack from others who feel I am not doing it in a nice fashion, but they are not here living through this hell that we are living every day. And because of that, I have learned to surround myself with those who are going to support me emotionally through my good days and bad (and there are a lot of bad) but unless you are facing this daily and being a caregiver continuously, you wouldn't understand. Somehow though, our close friends, do understand. And we can not thank Eric, Cindy and Stephanie enough for being by our side and being supportive and visiting Curt and giving me a weekly break to do my grocery shopping. His friends bring him laughter and also brighten my spirits. We have also had Curt's brother Ernie, numerous friends and our parents' help with transporting the children (and Ern helping with Curt) and we extend the warmest of thank you's to you: Beth Simon, Erika Karber, Giles and Karen Feldpausch, Ted and Lisa Suidgeest, Tom and Tera Wenzlick and so many others who have offered to help or have helped. I don't know if they really realize how helpful they are being to us because I am unable to just hop in the car and go when needed. Curt needs someone here continuously, and as this disease progresses, those who can be here and take care of him gets more difficult to find. We just had an issue with the Trixie Lift we were using (it wasn't working all of the time, ugh!) and my parents were so kind to drive and pick another loaner up for us. Thank you!
I want to thank all of you for being a part of the Luttig Links for Tomorrow Golf Outing and Dinner Benefit last year. Also to those of you who have sent gift cards, monetary donations, rode in the Dalmac and sponsored our family, attended the Kooky Costumes for Curt at the Emerald, Heather Viele and the staff at the Lugnuts for sponsoring our family for Christmas, our UPS driver, Lee, and all of the UPS drivers who made Halloween special and have given Curt some amazing MSU Basketball memories, the St. Joseph Basketball teams, the Sunday night men's basketball players, Dr. Don and Dr. Nick and others I may have missed...all that you have done, has helped me to stay home with Curt and care for him and purchase much needed supplies that we use on a daily basis. I can't imagine if he had to be in a nursing home, with me not being able to care for him, and our children not being able to see him in our home setting. You have given us a sense of normalcy by being able to remain at home (I know that sounds odd), but your generosity and kindness is beyond appreciated. While thanking people, I need to also say a heartfelt thank you to the children at St. Joe who sent beautiful Valentine's to Curt. And also to Emily Palmatier (you know why) and a kind hug to Kevin Palmatier who took Brantae and Sadye to the Daddy/Daughter Dance this year. Unfortunately, the childrens' school is not power wheelchair accessible so Curt was not able to attend. Above all, we are blessed to have all of you by our side.
Recently, Curt was hospitalized twice in one month. Dr. Tony Briningstool and the staff at Sparrow took great care of him and we are so thankful to them for getting Curt back home. Annemarie, the nurse practitioner in the Neurology Department at U of M, has been there for us every step of the way and whenever I have a question or concern...she is there - comforting me and guiding me. The same goes for Kim, the respiratory therapist at Carelinc. Every day there seems to be changes and we do our best to adapt. And I will be honest, the changes just get more challenging. But I will tell you what...we will never, NEVER GIVE UP!
Love and Cure ALS,
Leslie
Posted: 3-12-11, by Curt
My whole life people have been telling me I'm full of shit. It turns out they were right. I had to go to the ER last weekend and I had a bowell obstruction and was full all the way up. Thanks to Dr. Tony Briningstool and his great staff at Sparrow, I was home in 3 days. He really went out of his way to make sure I got the Cadillac treatment. Nothing beats being home and I don't plan on going back anytime soon. Lately, I cant stop thinking about eating. I haven't been able to eat for over a year now. Even something as simple as a plate of Doritos with cheese, sour cream and salsa sounds like a delicacy. I would recommend that you eat everything that you can get your hands on and just eat in moderation (Kirby). You can blame me for your culinary transgression. Go out and eat your favorite food and justify it by doing it in my name. Maybe all your meals will come to me in a dream so I can enjoy it, too. I won't lie, each week life gets a little harder, especially on those closest to me. My wife should be considered for sainthood. It is all worth it, when I get to see my kids growing up though.
Posted: 2-17-11, by Curt
Sorry it has been so long since I have written an update. Maybe I thought that I could avoid having ALS by ignoring it. Well, that hasn't worked. So maybe now I'll embrace a new strategy. We were able to have a very nice, albeit different, Christmas this year. Thanks to a lot of different people helping out in many different ways, the kids were as spoiled as ever. Christmas brings out the best in people, and that was very evident in the people surrounding us. The Lansing Lugnuts sponsored our family this year, and provided presents for all. I received some autographed MSU sports memorabilia that Cindy Nunn is always trying to leave the house with. She is a real big MSU fan. We have been following the kids around to basketball games all winter, just finished actually. I was able to make it to most of the kids games with a little help from everyone. The ones I couldn't attend, the Kelly's were nice enough to video tape for me. Can't thank them enough for doing that, it was extremely gracious of them. The kids just popped off the bus, so i'll continue this with another update tomorrow.
Thanks for being there for us.
Curt
Submitted by Leslie, October 25, 2010
It has been so long since myself or Curt have written an update and we apologize. Time just isn't on our side, and the day sweeps by like a gust of wind. Curt has faced many changes with his progression of ALS.
Curt used to use his phone and a text to speech application so he could communicate with us. Each day, it got more and more difficult for him to use his hands and by the first of September, he was unable to use his phone any longer. Communication was then replaced by a sheet of paper with letters on it. Curt would and still does, point to letters with his feet to spell out words. He was evaluated for an Eyegaze computer, and while we waited for that to arrive, ALS of Michigan loaned him some foot controls. With the foot controls, Curt can sit at the computer and maneuver the mouse with his feet. With this tool, he can access the computer by using a program called Click-N-Type. It is slow going, but Curt is very efficient with it.
One of the difficulties Curt faced as he got weaker, was his ability to sit in a chair. He lost all neck muscle strength and had to go from wearing his neck brace only when he traveled in the car, to wearing it whenever he walked or didn't have his neck supported in a chair. This made sitting at the computer difficult because we didn't have a chair with a high enough back. We knew the next step was getting him a wheelchair and we were able to get a manual chair as we took the next phase seriously and ordered a power wheelchair. All of this may sound simple, but in order to get these necessary types of equipment, it takes someone doing an evaluation, them filling out a report and then trying to get the equipment. Not all features are covered by Medicare and those not covered, will be able to be purchased with donations we have received from you. Getting a wheelchair is not as easy as running to Walmart and purchasing that mega large bag of M & Ms. The company we ordered the wheelchair from, gave us a loaner power wheelchair for Curt to use. He is unable to control the chair by himself because of his lack of movement with his hands, but I can move the chair to the computer where he can sit and get online. The wheelchair he will be getting will be custom to him with the correct support of his body and it will also have controls down near his feet that will give him independence. He will be able to adjust the tilt, height, move around the house (to some extent) by himself. We are hoping that he doesn't lose the ablility to move his feet, because seeing he has foot control, this wheelchair will give him that independence. The power wheelchair is very heavy and we will be purchasing a portable ramp for when we want to transport it in the van. We were able to borrow a ramp from a friend, and that is now installed outside of the house. I know getting the wheelchair in the van may be difficult, but, once we get it and I get the proper restraining system for it installed in the van, I will be doing a few practice runs.
Ok, back to the Eyegaze. The Eyegaze is a computer that has a camera attached to it and the screen has a keyboard. The camera calibrates to Curt's eye movements, and by moving his eyes, he can select a letter and type words. The computer will also speak his sentences. It's an amazing tool and Curt is very quick on it. He is back with his sarcasm in full force and he can talk with the kids again, though as usual, they don't always listen!
In our home we had an older computer that seemed as if it was on it's last leg. A few years ago we had a computer go on us, and we lost an entire year of photos. I was so sick to my stomach and we and our friend, Bill, did everything we could to retrieve them, but didn't have any success. Knowing we were going to need a new computer, we asked our friend, Eric, what we should get, along with how to back-up our photos, etc. Eric, sneekily sent out an email and like a snowball, friends with a bottomless pit of kindness, made donations to get us a new computer. Eric figured out what we needed and with the extra money, we were also able to get high speed internet (we had dial up) and you have no idea how that has made such a positive change. Curt loved to read, but as his neck got weaker, he could no longer do so. And when I say read, let me say that it would take him a week to read a book and if we were reading the same one, I would be done in a few months. Well, our friend Cindy came over last week and showed Curt the Barnes and Noble site where you can download and read books. With highspeed internet, Curt is able to do this. He downloaded a James Patterson book and sat at the computer listening to the music cranked and read the entire book in, I believe, two days! Did I say he loves to read? I know, we know, that so much is being taken from him, but with your kindness, you have helped give him back a few of those tiny things in life that we often take for granted. Thank you, always, for being there. I don't know if you realize how thankful we are for everything you are doing to help us.
I know many of you may not fully understand how tiresome it is having ALS. Curt went from using his ventilator only while sleeping at night, to using it consistently during the day. This change seemed to happen in just one day. Progressively, his lungs get weaker, and the energy it would take for him to walk just 20 feet, wore him out. He still has leg strength, but what I have told people is that it is similar to balancing a ton of plates or glasses full of liquid on a tray that is not centered on your hand. It's unsteady. Curt has to try to balance his upper body because he lacks the muscle strength, which in turn makes it more difficult for him to breath. Going anywhere, outside of the home, takes a lot out of him and 99% of the time he wants to stay home. And I will admit, trying to get him ready to go somewhere takes a long time. A little over a week ago I had to take him to get his flu shot right in town. The entire "trip" took one and a half hours - just to get a flu shot.
Because ALS robs one of their ability to move, Curt often needs his arms adjusted, face scratched, pillow moved, etc. Again, all of the things that we take for granted, he is unable to do. One day, I had a place I needed to scratch and to try to see what Curt was feeling, I tried not to scratch it. I was going crazy. In a single day, think how often you scratch your face, rub your eyes, adjust your clothing, move around. And when I finally get Curt into bed in the evening, it takes a lot of adjusting of pillows, reclining him back to the correct angle, getting his head just right...and he needs suction throughout the night at various times, and often needs his arms and head readjusted. There isn't a schedule and some nights are better than others, but I get tired...and grumpy. Interruped sleep isn't fun, but what is lack of sleep compared to what Curt is dealing with? It's nothing.
The continued support from everyone just...I honestly don't know how to explain it. Thank you. You are doing so many things for our family and helping in so many ways. Please feel comfortable to shoot an email to Curt at luttig814@aol.com. He likes to hear things that are funny...so give him what you've got!
Again, thank you for your love, for your support, for helping us fight this fight.
Submitted by Leslie, March 23, 2011
amyotrophic lateral sclerosis
Our days are so different from what they used to be. Mornings are full, as it takes quite some time to get Curt cleaned up in the morning, get him from his bed to his wheelchair, and continue his care throughout the day. We have a Trixie Lift that enables me to lift him, but even getting the sling under his heavy, limp body, is very strenuous. And nights are full of suctioning, adjusting his body for comfort, wiping his eyes, etc. Some nights he may call for me via our wireless doorbell which is attached to the foot of his bed (he still has some foot movement to ring it thank goodness!) every hour of the night. Other nights, it may be only once. There's no schedule, no planning...I just am on call. For Curt, he can not move his body to get comfortable. If there is a crease in his sheets, it can cause discomfort which can lead to a bed sore. If he has something in his eye, he can't wipe it. If his skin is itchy, he can't itch it. If he is in pain, he can't call out. The Eyegaze helps me to communicate with him, but if you were to be near Curt without it, all of the things I have listed he may be needing, but you would never know by the look on his face what was needed or what he was feeling because his facial expression remains the same. He could be yelling inside, "I need you to move my leg, please" but you would never know that. More than not, we as individuals, take our daily simple movements for granted, but try to place yourself in his position...a prisoner in his own body...unable to do anything. And that's where I come in. I try to be there - the best that I can. And I have taken slack from others who feel I am not doing it in a nice fashion, but they are not here living through this hell that we are living every day. And because of that, I have learned to surround myself with those who are going to support me emotionally through my good days and bad (and there are a lot of bad) but unless you are facing this daily and being a caregiver continuously, you wouldn't understand. Somehow though, our close friends, do understand. And we can not thank Eric, Cindy and Stephanie enough for being by our side and being supportive and visiting Curt and giving me a weekly break to do my grocery shopping. His friends bring him laughter and also brighten my spirits. We have also had Curt's brother Ernie, numerous friends and our parents' help with transporting the children (and Ern helping with Curt) and we extend the warmest of thank you's to you: Beth Simon, Erika Karber, Giles and Karen Feldpausch, Ted and Lisa Suidgeest, Tom and Tera Wenzlick and so many others who have offered to help or have helped. I don't know if they really realize how helpful they are being to us because I am unable to just hop in the car and go when needed. Curt needs someone here continuously, and as this disease progresses, those who can be here and take care of him gets more difficult to find. We just had an issue with the Trixie Lift we were using (it wasn't working all of the time, ugh!) and my parents were so kind to drive and pick another loaner up for us. Thank you!
You have given us a sense of normalcy by being able to remain at home (I know that sounds odd), but your generosity and kindness is beyond appreciated. While thanking people, I need to also say a heartfelt thank you to the children at St. Joe who sent beautiful Valentine's to Curt. And also to Emily Palmatier (you know why) and a kind hug to Kevin Palmatier who took Brantae and Sadye to the Daddy/Daughter Dance this year. Unfortunately, the childrens' school is not power wheelchair accessible so Curt was not able to attend. Above all, we are blessed to have all of you by our side.