Thirst For Life

This will serve as my first official blog entry, ever. I have never been a writer so I think this will be a way for me to grow, as well as journaling my thoughts and emotions.

ALS has drastically changed me from a walking, talking , handsome father of Ashton into a nearly paralyzed ventilator dependent handsome father of Ashton. In 2017 when I was diagnosed, I realized I had symptoms back in 2015 of constant muscle twitching but never thought anything of it.  July of 2015 I suffered a comminuted calcaneal fracture, also can be described as I did something stupid and shattered my heel. I believe this event triggered the stress that led me down the path of life with ALS. Yes, I have ALS, but ALS doesn’t have me.

This journey has definitely changed me emotionally, spiritually and functionally. I guess I came to realize that life is beautiful if you choose it. Family, friends and love are what fuels my fire today. That’s what I choose, and I will fight like hell to enjoy the beautiful called life.

The pandemic really screwed up my desire to travel before my functional decline rendered travel difficult. As I’ve been stuck at home, I learned to find entertaining ways to keep my mind occupied, as I feel that inner growth will be a driving factor for my fire.

Today I am thankful for my family, friends and my caregivers. Seven days per week, from 8am to1pm and 6pm to 11pm my caregivers enable me to functionally live, and alleviate the stress from my mom. During the hours of 1pm -6pm I am busy on my eye gaze computer discovering new knowledge and communicating with friends. Mom has caregiving duty during this time, and I am fortunate she still loves me because I probably drive her nuts! Every morning around 5am I wake up and hit the call button that summons mom to my room. Sometimes I need water, sometimes I have to pee, sometimes I have mucus, and sometimes I have anxiety over breathing difficulties and I don’t want to be alone. Whatever the reason is, she always comes to my rescue. I am just very thankful for everyone’s help. My siblings keep Ashton in check where I am unable. My dad for being a great grandpa to his grandkids. Friends that check in on me really makes me smile.

The next chapter is beginning, tracheostomy time. May 5th will now be Cinco de Tracheo surgery at USC. I am scared and excited at the same time. Scared of life without speaking from my mouth, and scared of the financial burden I am about to incur. Life with a trache for me will probably require more caregiving hours, and more stress to my family.  I am excited to be able to breathe easier, and clear mucus from my lungs without choking on mucus plugs.

I am just excited to live!

Shaun