Though I haven’t posted much, I am a regular (daily) reader of the forums and have also noticed your absence. I, too, am a member of the faulty motor neuron club (in my case, SMA in lieu of ALS) and am in the process of transitioning to different adaptive technologies (I recently started learning Dragon, in fact). I believe we are fortunate to live in such a time where new technologies arrive daily to help us do what we want to do, even if our bodies would suggest otherwise – and I TOTALLY include Glowforge in that category! I wish nothing but the best and continued health for you.
I’ll say this… My wife’s got progressive multiple sclerosis. (Most people are familiar with somebody that has relapsing/remitting MS. Progressive, as the name suggests, gets worse from inception to death.) There’s no cure for MS. It’s out of our control. But we live with the understanding that medical breakthroughs can happen every single day.
Thanks! Do keep your eyes open for clinical trials. We haven’t done any, but we would if the right one comes up. Everybody’s different, but I’ll tell you… My wife used Copaxone for a couple of years and she had so many flare ups she used to joke that she wondered if she was actually injecting MS into herself. A few of years ago she switch to Tysabri… not a single flare up since.
I obviously can’t speak for @B_and_D_T , but a good guess would be the Tobii Dynavox. It’s the big name/most common assistive speech device.
Owing to the frustratingly complex rules whereby tech like this gets on to the list of Medicare/Medicaid (government subsidized healthcare for those not in the U.S.), once a device gets approval it generally stops all development (if you radically change the thing, you have to get the “improved” version approved as a separate device and that takes ages and endless paperwork). I’m pretty sure Tobii is using 20 yr old tech. Stable, but limited and not very hackable.
And you have to fight tooth and nail to get it… Medicare/Medicaid frequently drags its heels on things that would seem obvious. And if they won’t cover it, it ain’t cheap! Cheapest option starts at $4k. Tobii even has a special web portal to help you find funding.
My voice tech is a combination of open source stuff:
While I still had some semblance of coherent speech (i.e, when I still sounded mostly like “me”), I did voice banking through Model Talker. It’s a free, web based program run by the Nemours Speech Research Lab at the Alfred I. duPont Hospital for Children in Delaware. Basically you can create your own synthetic voice… like a personal version of Siri
I purchased an eye tracker from The Eye Tribe. They’ve since been purchased by Oculus, so its no longer available.
I can also use my synthetic voice on my Android phone. I have a $5 app called Speech Assistant AAC. It uses the Android keyboard and it’s predictive text engine.
This works for me in part because I can still control a mouse on a PC and my right hand/index finger enough to text.
Bill, it’s great to see you back! I’ve enjoyed the thoughtfulness you bring to the forum, and I’m very glad you’ve got some decent tech to keep you among us.
I am so sorry Aunti, and I know you don’t want that - but I admire your strength and courage, and thank you for all the helpful links that you had to dig up during an education you never wanted.
My nephew’s birthday present to me was to do the ice-bucket challenge. I don’t think he really understands much of the underlying meaning (beyond the internet meme-ness), but I had meant to post it here for y’all, cause I thought it was cute (and # of views means so much to kids these days… I can’t imagine the social anxiety I would have suffered from a lack of views if such things had been things when I was his age)
potato potahto