Knockout Punch

IMG_6493I’ve reached the full dose of my study medicine and it’s knocked me out.  At least I think that’s what it is.  You see, I’m working on a new daily schedule to help me handle the meds and ALS overall.  My weekends are always sleepy because hubby is a vampire and I try to stay on the same schedule so I can be with him.  I’ve tried to convince him that I’m like an infant who needs her rest.  I guess eating food with my hands, wearing bibs (photo), and taking forever to finish a meal haven’t been enough proof of my new baby-like status.  ALS has changed both of our lives so much, but we try to roll with the punches.

Diet changes that take getting used to include eliminating foods that are dry and get stuck in my throat easily or that are small and just roll right down my throat and cause me to choke or cough.  Water is one of the bad guys.  It just runs down my throat unless I try a chin-tuck swallow or use a thickener.  Stuff like potato chips or small hard candies fall into the foods-to-eliminate category.  Movie popcorn should fall into this category too, but it’s hard to imagine going to the movies and not having popcorn.  Eating popcorn requires concentration that I may not want to divert away from the movie screen.  I’m still trying to figure out a satisfactory substitution.  It may be time to shop in the baby food aisle and check out the snacks.

I also never realized how wonderful a hamburger on a bun could taste until now.  A bun-less burger is similar to watching a movie without popcorn.  It’s become a necessity to ask my husband to cut my burger into quarters.  Besides making it easier to chew, it is also easier to handle!  And that can be an added bonus.

IMG_6590Fruit and veggies fall into another important category and not just because your Mom always encouraged you to eat them, but because we all know that eating enough of them each day means you can spend less time in the bathroom.  (TMI?)  Unfortunately, even these good foods can be bad for me if I don’t cut them small enough.  I just ate my leftover Chinese food for lunch and my aide, who knows me well, served it to me diced up (see photo on left).  Same great taste, just a different appearance.

So my baby-like sleep schedule includes baby-like food:  smaller pieces, sippy cups or straws, applesauce and yogurt in squeeze packs, and overall better choices.  (I write this as I steal a piece of Halloween candy that will require much concentrated chewing.)  Chewing takes me a lot of time and effort.  ALS has not only messed with my voice, it has also messed with swallowing and friendly dinner conversation.  Oftentimes you will see the frustration in my face as I attempt to eat dinner and have a friendly conversation.  So if you plan to join me for a meal, please be prepared to bring the conversation with you.

 

5 thoughts on “Knockout Punch

  1. Joanne Harper says:

    Kathryn, you are the bravest woman I know! Actually, you are the bravest person I know. You are in my heart and prayers every single day. Your blog is amazing. It totally reveals your spirit, your humor, your strength and your caring to share. I love you and can’t wait to see you in November!!! ❤️

    Like

  2. Kikkie and Paul Manginelli says:

    Kathhryn,
    Greetings from Texas y’all !!! Thank you for sharing your story. The miles may separate us, but we pray for Joe and you everyday. Your spirit is growing stronger every moment of each day.
    Your blog is a reminder how we take the little things for granted.
    Love & Hugs from Texas!!!

    Like

  3. Marge & Sal Sicurella says:

    Miss you guys! Your blog is wonderful! It really brings awareness and helps us understand your journey. You and Joe are the most loving people we know!
    Always in our thoughts and prayers! ❤️

    Like

  4. Jeanne jalufka says:

    Kathryn I am proud of the stand you’ve taken to promote ALS awareness. I hope that you are living with minimal pain, and find comfort knowing you are helping others understand the devastating effects from als. ❤️

    Like

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