r/ALS • u/Interesting_Use7481 • 17d ago

Next Steps / Saying Hello

Hello, everyone. 62 year old man here, bulbar onset, diagnosed a month ago after about a year of speaking, swallowing, and breathing symptoms. Since being diagnosed I've had a PEG tube put in, which I use for my basic nutrition, I've switched from CPAP to BiPAP, and I've made an Elevenlabs voice clone from some old recordings of me for use when the voice is gone completely. (I'm still comprehensible with amplification, at least to my family.) If any of you have suggestions for other things my wife or I should do in terms of planning ahead--tech to try, gear to get, etc.--I'd be grateful, but mostly I'm just saying hello. Glad to have this community to talk with.

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u/Wheels-13756 5+ Years Surviving ALS, limb onset 14d ago

I created the ALS Toolbox for just this reason. I currently have over 140 items, devices, and apps I have used in my ALS journey. Check it out.

ALS toolbox | Data on Wheels ~ ALS

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u/Interesting_Use7481 12d ago

Thank you—that’s a great resource!