I am Alicia Hartsell
a family member of someone we've lost to ALS
South Carolina
Our greatest fear lived out that day.
We lost our precious Dad August 2022 to this cruel disease. He was officially diagnosed just 6 months prior, but his journey began a few years before.
It was March 2019 and he began to slur his words then lose his voice… we were sent to an ENT. After the first ENT, and a second ENT at MUSC, they said they have no idea. What!!! How do you have no idea!?!?! This was also in the middle of COVID so unfortunately the whole world had shutdown.
Long story short we were finally sent to the first neurologist who said “I see no strokes or anything wrong.” 2nd neurologist maybe it could be ALS, but did a “test” and said yeah probably not. Mean while my Dad has fully lost his voice, is choking, hands are weakening. Me, my mom and sister are watching this man, who we called Superman my whole life become a shell. Depressed and reclused. 6 months later my Dad agrees to go Charlotte NC to a ALS specialist. Our greatest fear lived out that day. Basically told ways to make him comfortable.
Isn’t there anything you can do for him!!! We cried and hugged not believing this reality for our precious guy.
This was our 2nd Thanksgiving without him and I can’t believe the years he suffered and often wondered did he suffer quietly with this disease before losing his voice.
