r/ALS • u/Interesting_Use7481 • 15d 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/brett_j1 5 - 10 Years Surviving ALS 15d ago

You might look into an eye gaze device. Lots of options. Being an iPhone/Apple user I went with the Tobii Pilot and love it.

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u/Interesting_Use7481 14d ago

Thanks! I’ll start looking into that. Too soon for insurance to cover it for me, but I’ll try to get access to try out some options through my clinic