The Brutal Reality that is ALS

When my friends and family first approached me about creating this website, I agreed to do it with one stipulation, that I wasn’t responsible for its content, or writing. I am an awful writer. So, after a few years of it up and running, look who’s responsible for the content and writing. Like they say, “Father always knows best”, or has foresight for that matter. :-)

So we survived a long, cold winter and spring. and it wasn’t easy. People are always asking me how I am doing? I always respond with “great”, because I consider it rude to talk, or complain about one’s health. In all honesty, it hasn’t been so “great”.  It has been really bad. I have decided to lay it all out there, because so many of you want to know why I am not always up for a visit, or visitors for extra lengths of time. Here is why.

I can barely eat. My tongue is too weak to move food. The same goes for my throat. Choking and coughing up food are constant. Meals take forever and usually end when I get bored, or whoever’s feeding me gets bored. I go to bed hungry many nights. My clothes do not fit anymore. Much of this is my fault as I chose to not have a feeding tube.

Drinking is equally problematic. I usually drink from the right side of my mouth. It then comes out of my partially paralyzed left side (kind of funny if it weren’t so sad). Yesterday, I couldn’t satisfy my thirst. Sucks.

I’m so thin that sometimes, when I look at myself I get sick to my stomach. Despite all of this, I am constantly being lectured on my non-vegan diet.  😉

I pee once a day, poop once a week. No kidding!

Pain is constant. At one point this winter, I had multiple ingrown toenails, awful carpel tunnel pain in both hands, a pinched nerve in my neck and debilitating shoulder pain, so bad, I considered amputation. All at the same time. I was on more morphine than any of my docs and pharmacists have ever seen anyone on.

I have constant weeping eyes due to a chronic eye disease.

I can barely hold my head up. My neck is becoming too weak to support it.

I haven’t slept through the night in 3 years due to pain, discomfort and now hunger.  Elizabeth has definitely slept less than I have.

Excess saliva is constant. I have a suction machine and medication, but at times you’ll find me drooling on myself like an old person, or baby, your choice.

I forgot to mention… that I can no longer speak. If I don’t say “thank you”, it’s because I can’t.

You may think I am just feeling sorry for myself. Not true. I’m just trying to explain why I’m sometimes grumpy and  why I might not be up for a short visit, or a two week houseguest(s). I love your children, but I don’t feel comfortable with them staring at me and I don’t want them seeing me this way. I don’t want to be remembered like this. A little girl the other day buried her face in her father’s shoulder so she wouldn’t have to look at me. I have way too much pride, it’s hard.

There is some positive news. With some changes to: the way I transfer, my diet (no dairy) and my bed, I have managed to eliminate much of the chronic pain I have been experiencing the last couple of years. I’ve cut my morphine intake in half. This has just occurred. Great news as I have been sleeping so much better the last week, or so!

Hopefully, I didn’t offend or piss anyone off with this post. That wasn’t the intent. I wanted people to have a better insight of what I have been dealing with, not to mention what my family is having to deal with. ALS is a brutal disease. It certainly hasn’t spared us thus far. Now excuse me while I go get Gabby, I have snot running down my nose and into my mouth. No lie! :-)

 

 

25 thoughts on “The Brutal Reality that is ALS

  1. Andy Smith

    Kreg,

    You said “I don’t want to be remembered like this.” I have a picture on how I remember you from Arizona State’s 1987-88 yearbook that you might like. I found it after much librarian digging at ASU’s library. My youngest goes to ASU now and I had a friend from High School tell me long ago that I was in this yearbook so I decided to find it while down there with my son. YOU are on this page as well making a tackle!!

    Just can’t figure out how to load or send it to this page. Send me an email and I will attach it.

    Take care as best you can!

    Andy

    Reply
  2. Carol Hamilton

    I can’t tell you how many times I have read this. I can’t tell you how much this tugs at my heart, pisses me off, makes me want to cry, makes me want to scream. I bet you wish you could scream. Who knew screaming was a luxury.

    We are launching our #WhatWouldYouGive to #endALS campaign. It is the compelling brainchild of Sarah Coglianese, who has been fighting this disease as a young (witty, beautiful, brilliant, hysterical) mother. If you haven’t read her blog (http://www.speed4sarah.com/sarahs-blog/), do it. Trust me. The gist of the campaign is for people to give up an ability that those living with ALS were forced to give up.

    Last year, I spent a day in a wheelchair. It sucked.

    This year, in honor of your moving post, I will be “going to bed hungry”. I will sit with others as they eat. I will prepare soft foods, and ask people to feed me….chin to chest….at the agonizing pace you face. I will say nothing as they do. There will be none of the social interaction we all ascribe to and enjoy at meal times. I doubt many will have the time nor patience for me. This must feel so lonely, Kreg.

    But you are not alone.
    And if I could not-eat every day of the year to take this disease away from you, I would.
    I adore you.
    Watch for my #whatwouldyougive posts on social media. I’m gonna carry you with me every step of the way.

    All my love,
    Carol

    Reply
  3. Dave Smith, BSC

    Haven’t been able to come up with words. Rare for me as I’m always the one with something to say. Kreg, what I can say is that you are a man I hold in the very highest regard. You’ve faced this shit hand with remarkable bravery. Thru such hardship you keep your sense of humor and im glad you wrote that update.

    Reply
  4. Kris Mikaelian (Cederquist)

    Hi Kreg,
    I have been keeping up on you through friends of friends, posting your notes and of course your awesome videos of courage and strength. I was thinking of you the other day, wondering how you are doing. I have to say, you were quite the champ in school and still are throughout this fight. Prayers for you and your family for continued strength and support from one another. Stay strong and thank you for sharing. 🤗

    Reply
    1. Sherry White

      You are loved kreg . My high school “crush” is now full blown love!
      Your courage inspires my friend. God Bless you and your amazing family

      Reply
  5. Camille Corti

    My neighbors, the Palkos, were the coolest! I remember the beautiful Elizabeth to be a very talented photographer, Kreg, the badass pilot, and two of the cutest kids that I got to babysit! My sister and I still mimick a sweet 3 year-old Gabby saying “could I have a lick?” (she wanted to share a lollipop) when we are asking the other for a bite of something :)

    I have always admired your family ❤️🙏🏼

    Reply
  6. Andrea Layman

    Kreg,

    I can’t even imagine what you and your family are dealing with. Your letter was brutally honest and at times humorous! Your explanation of ALS was quite eye opening.

    You, Elizabeth, Kyle and Gabby are amazing!
    We think of you often and wish you less pain, more sleep and of course some good beer!

    Xoxo
    Andrea, Alex and Sam
    Layman

    Reply
  7. Mahhad Nayyer

    Kreg, Liz, Kyle, and Gabby. You all are in my thoughts some days over the months and years. I wish all the best for you all. Lots of love!

    Reply
  8. Martha White

    Keegan, Randy and Vern keep us updated on you and your family. The one thing Randy always says is that you still have a sense of humor. Yes, you truly are our hero. We all think we know how rough ALS is but you set us straight. I am glad you put it all all out there. I don’t understand why good people have to struggle with such as this. Those of us that are growing older and have aches and pains should not complain. We should be thankful for all the good we do have. I hate we live so far apart but you’re always in our prayers. Know how much you, Elizabeth, Kyle and Gabby are loved. God be with you always. Mart

    Reply
  9. Emily Mineau

    I love and admire you so much for this post. You’ve always been such a brave person and I’m so grateful to have had someone like you to look up to. You’re always going be my wicked handsome and badass Uncle Kreg to me. And by the way lifes too short to not eat meat, sorry Gabby! xoxo E

    Reply
  10. Frankie Green

    Kreg, we were so moved by your honesty and transparency. It has been a very long time since we have seen you guys, but you are always close in our hearts. We love all of you and will continue to uphold each of you in prayer. Sending love your way! George and Frankie

    Reply
  11. TimChristnagel

    Kreg,
    We have struggled with the feeding tube debate for years now. Our youngest son, Miles, has CP and has many of the same symptoms you are having to endure. After endless research and talking to numerous friends in similar situations, the responses were unequivocally in favor of the tube. It’s discreet, and doesn’t have to be the sole source for nutrition. The tube would provide an option that would give Miles a fighting chance when he was too sick to eat or take medications, but did not need to be revealed during his healthy times. Feeding tubes don’t have to be a replacement for oral nutrition, but can be supplemental to keep you nourished. Certainly you can still taste and eat as you are comfortable with, but if you aren’t up for it, can still be nourished, which is likely to help you on so many levels. Please know this is just a friend sharing a thought, not passing judgement- clearly this is your choice, and your choice only. You know you opened yourself up to everyone’s opinions and advice when you bared your soul here, right? :) I love you like a brother and can’t wait to bring the whole family for an extended visit (JK). Thinking about you!
    TC

    Reply
  12. Rick Fernandez

    Kreg, you are an inspiration to everyone you encounter. Your honesty should humble us all. I am sure everyone reading your blog(including myself) has days where we complain about our lot in life. We all need to take a step back and truly love every minute. You show us how to be strong and your family shows us all how to love! I wish you and your family nothing. It the very best everyday!

    Reply
  13. Tamara Perri

    I don’t have the words to tell you how much I Admire your strength and determination. You and your family are in my thoughts and prayers.🙏🏻🙏🏻🙏🏻

    Reply
    1. Charlie Nanos

      I have always admired your courage Kreg, and that of your family. Thank you for taking the time to post. You are in our prayers.

      Reply
  14. Kelly Buck Cialone

    ALS sucks. I can hear your voice in your words. Your Dearborn family loves you. Please find strength in the love that surrounds you. 💕

    Reply
  15. Jon Podany

    Sending you much love and prayers. I admire your courage to share with us what you are going through. It was tough to read, but very helpful and we will certainly step up our prayers for relief from the pain, sleep and ability to eat/drink. Love you buddy!

    Reply
  16. Kelly Martin

    Thank you, Kreg❣️ You are an extremely special person and your pride, humor and grace shine. Sending warm thoughts, strength and prayers to you and your family; however, I know your family get their strength from you💝 Hugs💞

    Reply
  17. Andrew Washington

    So Sorry you are going through this terrible disease. It has been nothing but cruel to a great guy with a great family. Your fight and determination has been an eye opener that life is precious and can change at any time. I don’t think of you every day but often. After reading this blog of your daily struggles it humbles me how well I feel and have no limits. Kreg, you are a light to everyone you know and I am sure your courage and strength has been conversations to people that have shared your story. You may be thin, you may be weak, but you have shown a will and purpose that inspires. You are awesome.

    Reply
  18. Annemaria and Rich Hornby

    Dear Kreg, Elizabeth, Gabi and Kyle. You are such an incredible family! People love all of you so very much. I can’t even begin to imagine how truly difficult this awful disease has been on each of you. Kreg, it speaks volumes that you share the brutal reality of ALS with the world. As hard as it may be to write your thoughts and feelings down I do hope you continue. You’re such a fighter and champion…you prove that every day! We miss you all like crazy. You are always in our thoughts and prayers. Love, Annemaria and Rich

    Reply
  19. Tae

    I keep praying for you to be as painless and comfortable as possible and more positive news to come one after another.

    Reply
  20. Deleigh

    Hard to find the proper words. Just wish we could give you each a big hug.

    Love you, deleigh and scott

    Reply
  21. Bruno and Judy Ybarra

    Our dearest Kreg,
    Your honesty mixed with your subtle sense of humor are powerful and almost overwhelming. You say that you are an “awful writer”. I say that you are an awesome writer. It is rare to find such truth in even classical writers; and anyone who reads will admit that, I think. The truth matters, even when it is so painful. It causes one to want to share in your suffering, if only we could. I’m not sure that any of us are brave enough or strong enough to endure what you have endured. But for those of us who love you so dearly, we can only remember the one person in the house who said, “What in the world is ‘Er Hita’? No one else had even observed this anomaly in our Christmas decorative theme. Help us to keep our chins up, Kreg. You are our hero.

    Reply
  22. Caroline

    Kreg, Thank you SO very much for your honesty and transparency. No apologies. Just information. Thank you for your frankness. Thank you for easing ‘if just for a moment’ the guilt I feel when the flair ups of my slowly progressing little diseases create confusion for my family and friends. My “great” and “fine” look very different from yours, but still a common response I give. I get it. I am both saddened and comforted that I somewhat understand what you mean. Honored to know you and call you family, you will ALWAYS help me to get up and keep going. And you and your family have my utmost respect. I love you all very very much. 💙💛💜 sending much love and many prayers.

    Reply
  23. Haley Floyd

    We love you and pray for all of you Palkos. Kreg, I admire your ability to keep some humor! You have done will continue to do so much for ALS education and awareness!! ❤️❤️❤️

    Reply

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