Eye-Mouse for ALS Housemate
Donation protected
This is Jason (aka 'Lady B' in Second Life), one of my four 'roommates'. I put that in quotes, because we're a nonstandard household, supporting each other emotionally, doing what we can to help each other physically when one of us is ill or injured, but modern society doesn't really have a term for that.
Basically, we're a family, though not in the standard sense of one father, one mother, and however many children; we're a group of individuals between 35 and 57 years of age, and we've been a household for over 15 years.
Jason has genetic ALS, and in the past year, it's finally hit him, hard. He went from being able to walk, talk, spend time on the internet (he's a computer geek, and our resident computer tech), to being able to do nothing more than smile, blink, and move his eyes, all in less than a year. He can't move, he can't eat (he's got some machine giving him nutrition directly into the stomach because he can't swallow), he's got another machine to help him breathe through a small hole in his throat. He's currently in a care facility, since none of us are trained at the sort of care he now needs, but he's still part of our household, and we visit as often as we can.
His current way to communicate is for us, or one of his caregivers, to use a chart with the alphabet printed on it, and start calling out letters; he blinks once for 'no', and twice for 'yes'. We've found ways to speed it up a little; most alphabet charts are printed in 4 rows of letters, so we call 'top row'...'second row', etc, until he blinks for yes, then call the letters in that row 'til we reach the one he wants. Needless to say, this is slow and cumbersome, and although we're willing to take the time, not all of his caregivers are.
There's a company, Tobii Dynavox, that makes an eye-tracking 'computer mouse'; it detects eye movements, and communicates with the computer, to move the cursor around. This is something that would really help Jason to communicate. Not just online, but also so he can type out commonly used phrases, and save them, then play them for his caregivers.
He's a very intelligent and sensitive man, and I know this has to be even harder on him than it is us. We've been trying to find something like this eye mouse since he started doing so bad, and now we have at least a price quote for the equipment, and someone to set it up properly and teach him how to use it.
Everyone deserves a decent quality of life; this will help him get one, help keep his mind active and sharp, and help him keep in contact with his friends online, since most of them aren't where they can come visit.
Please help us help him.
Thank you.
I also arrange music. For anyone who's interested in it, if you go to https://halostar.bandcamp.com/ and buy anything, use the promo code JASON to get 50% off; all proceeds from that will go to the eye-driven mouse also. It's another way to say 'thank you for helping'.
Basically, we're a family, though not in the standard sense of one father, one mother, and however many children; we're a group of individuals between 35 and 57 years of age, and we've been a household for over 15 years.
Jason has genetic ALS, and in the past year, it's finally hit him, hard. He went from being able to walk, talk, spend time on the internet (he's a computer geek, and our resident computer tech), to being able to do nothing more than smile, blink, and move his eyes, all in less than a year. He can't move, he can't eat (he's got some machine giving him nutrition directly into the stomach because he can't swallow), he's got another machine to help him breathe through a small hole in his throat. He's currently in a care facility, since none of us are trained at the sort of care he now needs, but he's still part of our household, and we visit as often as we can.
His current way to communicate is for us, or one of his caregivers, to use a chart with the alphabet printed on it, and start calling out letters; he blinks once for 'no', and twice for 'yes'. We've found ways to speed it up a little; most alphabet charts are printed in 4 rows of letters, so we call 'top row'...'second row', etc, until he blinks for yes, then call the letters in that row 'til we reach the one he wants. Needless to say, this is slow and cumbersome, and although we're willing to take the time, not all of his caregivers are.
There's a company, Tobii Dynavox, that makes an eye-tracking 'computer mouse'; it detects eye movements, and communicates with the computer, to move the cursor around. This is something that would really help Jason to communicate. Not just online, but also so he can type out commonly used phrases, and save them, then play them for his caregivers.
He's a very intelligent and sensitive man, and I know this has to be even harder on him than it is us. We've been trying to find something like this eye mouse since he started doing so bad, and now we have at least a price quote for the equipment, and someone to set it up properly and teach him how to use it.
Everyone deserves a decent quality of life; this will help him get one, help keep his mind active and sharp, and help him keep in contact with his friends online, since most of them aren't where they can come visit.
Please help us help him.
Thank you.
I also arrange music. For anyone who's interested in it, if you go to https://halostar.bandcamp.com/ and buy anything, use the promo code JASON to get 50% off; all proceeds from that will go to the eye-driven mouse also. It's another way to say 'thank you for helping'.
Organizer and beneficiary
Talima TwoWolves
Organizer
Chula Vista, CA
Rhiannon Starsinger
Beneficiary