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DAWatch my 2-year ALS journey — from 2 days before diagnosis, to 1 year later, to today, when I can no longer speak. This is my unfiltered progression with amyotrophic lateral sclerosis (ALS) — also known as Lou Gehrig’s disease, motor neuron disease (MND), or Charcot’s disease.
Two years ago, I was teaching, walking, and talking. One year later, my speech began to fade. Today, I rely on assistive tech to communicate — but my story isn’t over. This video captures the physical decline, emotional fight, and the lesson I never expected: the world is full of kind people.
I’m sharing this to raise awareness and show what ALS/MND really looks like — not just the science, but the humanity. For newly diagnosed patients, caregivers, and families: you’re not alone. This disease takes your movement and your voice, but not your hope or your heart.
You’ll see:
– A clip from before diagnosis
– My 1-year update and changes in speech/mobility
– Today’s reality: no voice, but still finding joy
I made this video for anyone affected by ALS, MND, Lou Gehrig’s disease, or Charcot’s disease — and anyone who believes in strength through community. Please share this to help spread awareness and connect with others who need to see they’re not fighting alone.
Subscribe for more honest updates on life with ALS/MND — covering progression, adaptive tech, and the pursuit of joy even when life slows down.
#ALS #MND #LouGehrigsDisease #MotorNeuronDisease #CharcotsDisease #ALSprogression #ALSawareness #disability #wheelchairlife #hope #inspiration #GoFindSomeJoy
Even when you lose your voice, your story still has power.
@darin_nakakihara
