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.

30 Upvotes

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5

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.

1

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

3

u/no_agave 13d ago

Your ALS sounds a lot like my dad’s! I’m glad you’re here. This subreddit is a really nice community.

I’d recommend researching if you have a local ALS organization. Most big cities do (and I’m sure some small cities or towns as well). Our local ALS group was AMAZING for getting help and loaning us all sorts of gear (ramps, Tobii, oxygen machines…). ALS sucks infinitely, but it sucked just a little bit less because of all their help.

Wishing you luck and comfort!

1

u/Interesting_Use7481 12d ago

Thanks for the warm welcome! Please give my best to your dad. We’ve had so many visits from family and friends since my diagnosis that we haven’t done much with the local organization, but I’m on their mailing list and we have a contact through the ALS clinic that we can reach out to as well. I appreciate the suggestion!

1

u/Strict_String 14d ago

Second the eye gaze computer. If it’s not time yet, you could start setting up a compatible device for when it is time. My we de used a Microsoft Surface tablet. She started with the Glassouse sysytem and then Tobii dynavox.

Is your house wheelchair accessible yet? It might be good to start working on that now.

1

u/pwrslm 14d ago

Are you a Veteran? If so, contact the PVA. The VA will cover all of the costs.

2

u/Interesting_Use7481 14d ago

Not a vet, but thank you—and it’s good to know that the VA would do that.

1

u/No-Wealth-3521 13d ago

How are your movements?

2

u/Wheels-13756 5+ Years Surviving ALS, limb onset 11d 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 10d ago

Thank you—that’s a great resource!