How Amber Finds Joy, Love, and Voice With ALS (Full Transcript)

[00:00:04] Speaker 1: I am creating new memories every chance I get. I love being outside in the sunshine and I love learning new things and boy-oh-boy ALS has me learning new things every day. Recently on a beautiful day at Hopkins Demonstration Forest I went on a tree climbing adventure with local arborists and physical therapists. They raised us from our chairs in a sling 60 feet into the treetops for our very own bird's-eye view of the forest. It was breathtaking and the smell, talk about feeling one with nature. I couldn't wipe the smile off my face. The whole idea was organized by another local of Beaver Creek who also has ALS. My name is Amber Naramore. I'm 51 years old. I was diagnosed with ALS in February of 2024. To be honest, life brings me joy. I've been blessed with the ability to relish in the simplest moments that make life wonderful. When my symptoms started in August of 2023 with slurred speech, I began communicating with the speech app on my phone and a boogie board. I also threw in some basic sign language and a whole bunch of bad charades. The first time I heard my Eleven Labs voice say a simple phrase, my eyes immediately filled with tears. My greatest joy is my family. We laugh so much.

[00:01:54] Speaker 2: Even through the hard stuff, we have a way of finding the fun.

[00:01:59] Speaker 1: I became a grandmother at the age of 36 to Eva. She is 15, totally a teenager, very artistic, and has the best sense of humor. My second grandchild is Elliot. He is 9, very smart, very artistic too, and loves video games. My third grandchild is Annabelle. She is 9 as well. Loves to read, dance, and do cartwheels and all girly things. And little Karen is my fourth grandchild. He is 2 and all boy. He loves being outside and has the cutest smile.

[00:02:42] Speaker 2: Annabelle has no fear.

[00:02:50] Speaker 3: That boy takes an army. Yes, he does. I think he's been the craziest grandkid so far.

[00:03:07] Speaker 1: To lose the ability to speak is frustrating and, quite honestly, heartbreaking. To hear my voice when I use my device is an unmeasurable gift.

[00:03:27] Speaker 4: Look good, Penny? How are you, doll? I get to see her twice in one week. She ran the whole front of the house, and we haven't replaced her yet. Well, we miss her every day. We miss her every day.

[00:03:50] Speaker 2: I need Dan. A year ago today, I married you on the beach during sunset and couldn't read my vows because I couldn't speak. Today, for our anniversary, I want you to hear in my voice the words I couldn't speak myself.

[00:04:17] Speaker 1: I read something once that said, imagine I water you and you water me.

[00:04:22] Speaker 2: We don't drain each other, we just grow. And grow we have from co-workers to friends, then to more than friends, and now to be husband and wife. Running a restaurant together built the foundation for us to run our life together.

[00:04:37] Speaker 1: Lord knows we have faced some battles, but we fight them hand-in-hand.

[00:04:43] Speaker 2: I thank God every day for bringing us to one another. The love we have is true and strong. You are definitely my match. Our crazy not-so- little family that we share just adds to the joy and love of us.

[00:04:56] Speaker 1: I marry you today with all that I have, knowing it is forever safe-kept with you.

[00:05:01] Speaker 2: My heart, my soul, my life belongs with yours. I know our days are uncertain, but I promise to make them all the best they can be for the rest of my life.

[00:05:12] Speaker 1: I'll water you, you'll water me, and we will grow and grow and grow.

[00:05:16] Speaker 2: Happy anniversary, baby. I love you so much today and always.

[00:05:26] Speaker 5: You just had to, huh? That was beautiful.

[00:05:31] Speaker 1: Gotcha. you