Kathy’s Story

Site created on February 12, 2023

My family and I would like to welcome you to our Caring Bridge page. The purpose of this page is to find updates on our journey. I can't tell you how many times I have overlooked someone when I  send an update. I hope this will alleviate any oversights. More then anything, I pray you find encouragement, joy, laughs, and hope. I know someone with ALS can't have hope. Well, grab some popcorn and buckle up and join us on my ALS journey. With God there's so much hope!

Newest Update

Journal entry by Kathy Reno

My night was different. My sister had just left; she had come to color my hair. I guarantee those chemicals soaking into my brain have to be good right?

Anyway, Dale had just finished my bedtime routine. I had an extra thick blanket on… I was comfortable. I had asked Dale to put my feet in braces to help with drop foot. Dale was back in his room and Doug was fast asleep since earlier. It was just me and some God time.

I opened my digital copy of Banding Together (Thank you Carrie! That has been so helpful). I opened it up and began to pray. Of course I have to pray with my eyes closed because I get EASILY DISTRACTED!!! I already have a hard time with my mind wandering when I pray.

Remember when parents would use a harness on their kids, so they didn't run off? I never understood why a parent would do that to their kids. Then I worked with some pretty active children and I realized that it was more for safety. I am hoping that is why they did it. Anyway, I am pretty sure that the Holy Spirit has me on a retractable harness. I need pulled back in order to focus a lot. I was praying… only to have fallen asleep.

I ended up waking up at 2:44 in the morning. My foot felt like I had a chemical burn; that's the best way I can describe it. Certain materials do that to my feet and I am not sure why. I am only speculating, but maybe it’s a reaction from the medicine I take and the material? I was able to wiggle my foot out enough so that it didn't hurt.

In the process, I began to feel hot. I already had the fan on because I enjoy the breeze. I go to look at my talking device - it was locked up so I was unable to use it. Here's where I have to start laughing and crying in one fell swoop (Amy, that's for you).

I wear a silk bonnet to bed to keep my braids from being destroyed when they pull the BiPap straps over my head. As you may have guessed, they began to slide down my head and just about over my eyes. Try to imagine a person with a BiPap on and a bonnet almost covering my eyes; I looked similar to the guy from Fat Albert! I had a blanket covering me from my feet to my neck and my foot was hanging out of my braces. By the way, I do have two left feet. [Tip 101: when ordering braces for your hands or feet, make sure you order the correct side] I needed two braces, so I ordered two braces. Aside from looking like they would fit the Jolly Green Giant's son, they were both for left feet. Can you picture what I looked like? Well, this is what keeping a marriage interesting looks like.

If you recall, I mentioned my Tobi was locked up, so I could not text or even sound an alarm. I have my BiPap on, so my yelling is muffled. Did I want to start yelling? The more I laid there the hotter I got so I began yelling and yelling and yelling. I am going to guesestimate that I was yelling for at least an hour. Finally, my prince charming came to rescue his princess. The End… Nope! You should know me better than that! ;)

My problem is easy too . We will put a baby monitor in the hallway. But what about people who can't yell? People who have lost their voice and can't yell for help? So, I am calling any engineers that are tech savvy. If I am able to type with my eyes and surf the Web with my eyes there has to be a way to alarm a caregiver when they are  in distress. I am even able to adjust my wheelchair and drive my wheelchair with my eyes. I know someone out there can figure something  out.

   

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