Скачать или смотреть I Lost My Voice to ALS Here's How I'm Adapting Now

I never thought I’d need an AI version of my voice… but ALS had other plans. Talking has become so hard, but I refuse to stop telling my story. This is my first health update using my Eleven Labs AI voice — and it’s the next step in continuing to share my journey with you, even as my voice fades.

If you’re living with ALS (amyotrophic lateral sclerosis), Lou Gehrig’s disease, or motor neuron disease (MND)… or if you’re a caregiver, family member, or friend of someone facing this diagnosis… this video is for you. My mission is to share the reality of ALS while still finding moments of joy, connection, and purpose.

I want this channel to be a safe, inspiring space where we can talk openly about the hard stuff — from symptom progression to adaptive technology — without losing hope. My hope is that by showing my real journey, I can help others feel less alone.

In this video, you’ll hear:
• Why I switched to an AI version of my voice
• The challenges ALS creates for speech and communication
• How I’m adapting my content creation so I can keep sharing updates
• My personal thoughts on losing the ability to speak naturally
• Encouragement for others who are going through this too

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💬 Why I’m Using an AI Voice Now

ALS affects motor neurons, which control muscle movement. Over time, it weakens every voluntary muscle in the body, including those used for speech. Speaking has become exhausting, and I don’t want to disappear from the conversation just because my voice is fading. Using an AI replica of my voice gives me the energy to keep creating videos and connecting with you without pushing my body beyond its limits.

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💡 Why This Matters to the ALS Community
• Many people with ALS, Lou Gehrig’s disease, or MND will eventually face speech difficulties.
• Voice banking (recording your natural voice before it’s gone) can preserve your identity and help you stay connected.
• AI speech technology, like Eleven Labs, is becoming an important tool for accessibility and independence.

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❤️ My Commitment to You

This isn’t just about my journey. This is about raising awareness, building community, and encouraging others to choose joy even in the face of a terminal illness. Whether you’re newly diagnosed, caring for a loved one, or just here to learn, you belong here.

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📚 Helpful ALS / MND Resources
• ALS Association: https://www.als.org
• Motor Neurone Disease Association (MNDA): https://www.mndassociation.org
• Team Gleason: https://www.teamgleason.org
• Answer ALS: https://www.answerals.org

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📌 Follow My ALS Journey

🌐 Website: https://www.gofindsomejoy.com
📸 Instagram:   / darinnakakihara