Living with ALS

My Grandparents traveled to Florida every winter like just about everyone else’s grandparents. They left in November so we had an early Christmas with them. Only this Christmas was different. Grandpa had trouble talking right. His speech was kind of slurred. We joked and asked if he was drunk, he thought it was funny to. But then again that was his sense of humor. They got to Florida just fine and a few weeks later Grandma made a doctors appointment because his speech just wasn’t right still.

I remember it was late at night and I could hear my mom talking on the phone with my Grandma when she was telling my mom what they had found out at the Doctors. I didn’t know what it was at the time, I thought it was just the flu. So I asked a teacher of mine what ALS was and she wouldn’t tell me. And I still Thank God that she didn’t. I think “How horrible to find out from your teacher that your Grandpas going to die.”

So finally I got the courage to ask my mom what it was and when she started crying I instantly knew that it was bad news. My Grandpa was my hero. I loved him more than anything. I thought this man can not die. I don’t know what I’d do without and him- and I still don’t.

They finally came home from Florida and everything was different. His speech more slurred. He couldn’t really use his left arm. They were talking about getting him a computer that he could type what he wanted to say into and it would basically speak for him. That tore me apart. I honestly don’t remember what his voice sounds like. All I can hear is that stupid computer when I try to remember his voice.

He still did all the things that he loved to do though. We all thought that he wouldn’t be able to fish or hunt or play cards anymore. But I think he was determined to prove us all wrong no matter how tired or hurt he was in the end. He never let us know that he was in pain. It ended up that they weren’t going to be able to live in their home anymore because it wasn’t “Handicap Accesible” so a group known as “The Old Farts” re-built their cabin that they owned that was maybe 10 miles from their house and made it so that when the time came he could use his Amigo.

Eventually things got worse, he needed a feeding tube because he couldn’t eat anymore, he couldn’t use his left arm, he was having trouble breathing sometimes, he couldn’t walk very well. But he could still fish.

I spent 2 weeks up at their “house” with him the year that he passed away. And that is by far the best memory of him that I have. I learned so much from him, than I could ever learn from anyone. As much as it hurt me to see him eat food out of a can while we were all eating steak and roast beef. He still joked with us that his canned food tasted like what we were eating and that he loved it! He never ever told me that he was in pain and wanted to die. He joked with me and laughed with I didn’t connect his feeding tube the right way and had that nasty liquid all over me.

I often tell people that my “other” Dad passed away because thats what he was to me. And I wasn’t even his real Granddaughter. My mom was his step-daughter but he always treated me as if I was his own and I’ll always love him for that.

Please, if you know someone with ALS don’t treat them differently. Encourage them, they aren’t any different from you in their minds.