Thursday, April 23, 2015


For the past year and half, the thing Tony relied on the most was his Tobii. If he was awake, it was parked in front of him, and it became literally the only thing he could do for himself.

In case you don't know, his Tobii is a fancy tablet computer that he controlled with his eyes. He could browse the internet, send texts, watch movies on it, anything anyone else could do on a regular computer. He typed his blog posts on it... sometimes spending days writing the longer posts. It was his connection to the world, his only independence.

Tobii also has software that allows for text-to-speech, meaning Tony could type in words that the computer would then speak. He didn't use this much, because he didn't like the computer voice. But as talking became more difficult, and I had a harder time understanding him, he would sometimes type and just let me read it.

His Tobii was like a part of him. We had to send it off for repairs in late December, and the few weeks he spent without it were a glimpse of how completely ALS had changed his life. All he could do was sit in his chair and watch whatever dumb stuff was on TV, and even then he was dependent on me to change the channel. Maybe sitting in front of the Tobii wasn't really that different, but at least he could control what was happening on that screen.

So, today, I got the Tobii out of the closet and cleaned it up to give to another ALS patient in the community. We have befriended her and her husband, and they are both lovely. She was diagnosed before Tony, but seems to have a slower progression. I am so happy to give Tobii to her, and I know that Tony would be too. But for some reason... giving away this sterile, black, piece of technology is ripping my guts out.

They don't seem anywhere near a cure for ALS, so if you are interested in making a real difference for ALS patients right now, please look into the work that Steve Gleason and his foundation are doing. The Gleason Initiative Foundation supplies ALS patients with technology like the Tobii. These devices cost $18,000 and up, and I can't tell you how life changing it can be. Yesterday, the U.S. Senate unanimously passed the Steve Gleason Act, which would eliminate some of the many hurdles that stand between patients and these devices. Most patients can't pay for them outright, and Medicare has strict limits on what it will cover. So please contact your Congressional representative and urge them to pass H.R. 628.

So, goodbye Tobii... it literally feels like I am losing a member of the family... but thank you for all you did for Tony.

1 comment:

  1. Thanks Tobii! For all the funny, smart blog posts and kind e-mails you helped write, for keeping Tony from being bored out of his mind, for helping him communicate with his family and friends, for letting him watch his beloved soccer games and music videos, for letting him be himself as long as he could. You rock Tobii! Hope you and your new family get along great!

    I totally know what you mean, Amanda, about giving away these personal kinds of things. I felt conflicted initially giving away Rooster's banjos and fiddles and guitars and guns and tools and all the other stuff that he loved and were such a part of who he was. The Grenada banjo and the Volkswagen van were the hardest things to part with. But then the more I did it, the better it felt. It was something about having our friends get good use out of these objects, about passing on a legacy, about just the act of sharing that feels so lovely. Not to mention the extra closet space haha. And then there's getting so see what these things can do for others' lives. I saw a teenage kid playing Rooster's banjo the other day, and he was doing such a great job and it nearly made me cry with happiness. So kudos to you for letting Tobii go to a good home and make somebody's life a little easier and happier. Big karma points!
    ps: I heard from a friend of yours the other day and it seems like there may be a nice new tree in your future soon... :)