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ALS An Introduction

(May is ALS Awareness Month...buckle up!)


Post #1


October 14, 2015, 9:30 am


Welcome Mr. Reyes, I would like to introduce you to Lou, Lou this is Juan. You two will coexist from this day on, I’ll give you a few minutes to get acquainted. Did this actually happen? No, but this is what it felt like when the Dr. diagnosed me with ALS. As far as introductions go, this was not welcome or pleasant.


Lou had already made it’s presence known, we just hadn’t been formally introduced. Like an unexpected house guest, it showed up and never left. It has barged into our lives unapologetically and made itself at home. I imagine the following exchange…


~Hi Juan, nice to meet you. I’m terribly sorry to meet under these circumstances, but here we are. Unfortunately I am here to stay, you understand, right?


I numbingly nod acknowledging the comment.


Ok, now about me…I am, well allow me to be blunt, I’m a shitty companion. To date, I have taken from you; muscle tone and strength in your hands, your balance and your coordination. I will, depending on how aggressive I am, continue taking your physical attributes, rapidly or gradually. Only time will tell which path I take you on.


What will I take, you ask? Well if you’re ready to hear it, I’ll tell you, are you?


I think so, yes tell me.


Ok Juan, I will take everything. What do I mean by everything. Well, anything that is controlled by nerves that are responsible for voluntary movement. All the obvious ones and many most people aren’t aware of. Hands, arms, legs, those are the obvious ones. I will eventually take your ability to speak, swallow and even your ability to breathe.


Are you sure you want to hear more? I can be very overwhelming, it’s just my nature a character flaw of mine you could say.


I think I’ve heard enough for today. I am, I mean I feel rather numb right now. Honestly I’m really surprised I didn’t puke, I don’t really know what I’m feeling. I know it’s, I mean you are terminal, but…why, why me, why now? You’re going to kill me, yet you’re just here, sitting, unemotional and completely transparent.


I know, said Lou, it’s not personal, it’s just biology. By the way, Lou is just a nickname, my full name is, Amyotrophic Lateral Sclerosis. Again, I’m sorry, but I can’t help myself. For now just know I’m with you until I’m done.


This exchange takes place approximately every 90 minutes . Perhaps the dialogue is considerably more colorful, or laden with expletives. Most likely one sided, as Lou monopolizes the conversation due to our being dumbstruck at this introduction.


Now you’ve been introduced to Lou also…


TJO

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Freakin' Lou, totally a DB. I remember the day I was introduced to Lou, Doc came in and said Mr. Anderson you have ALS, do you have any questions? Oh, and btw, get your affairs in order. At, that point I think he excused himself from the room, leaving my wife and I speechless, unemotional like I had just been told I was going to die. Why, Why me, Why Now?🤷 Even today I am beside myself with the same questions... Uggh and Juan and I are in it for the long haul. Happy and sad about this.. 🥲

J'aime

Yep, mine is also full of every expletive known to man.

J'aime

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