Erin Taylor and Her Mom Lily on Living Fully with ALS
Meet the inspiring duo behind the @unsteadyandready instagram account, sharing life with ALS.
I sit down with Erin Taylor, diagnosed with ALS at 23, to hear what it?s like to build a life in your twenties while your body changes fast and your natural voice fades. Erin and her mom Lily show us how advocacy, humor, and everyday love can keep you feeling like a whole person even when ALS is always in the room.
- We chat about:
Grieving lost dreams and rebuilding purpose through ALS advocacy - Losing a natural voice and using eye gaze with an AI clone voice
- Choosing authenticity online to help others feel seen
- Managing dark moments by focusing on what we can control
- Finding joy in small outings and planning energy for big experiences
Erin shares her heart on Instagram to educate people that ALS can affect anyone, even someone in their 20's. She said she didn't know that was possible when she was diagnosed. If you'd like to share Erin's message, please send this episode to a friend. Thank you.
Hugs, Lorri
About Lorri Carey
On Friday the 13th, February 2004 at the age of 37, I was told I have ALS. I’m dying from ALS, yet I’m so encouraged to live life to the fullest. I’ve been inspired by so much to stay focused on the positive. I’m dying to tell you about what gives me strength, makes me smile and keeps me hopeful – in hopes of inspiring you too!
