Hi, Dani!
I'm still here and I check in from time to time. After a pretty fast progression the first two years, it slowed dramatically. I got a tracheostomy in early 2011, with my breathing declining rapidly, but since then there has been almost no change, and I still use the ventilator only at night. I'm breathing on my own during the day.
Aside from that, I am pretty much completely paralyzed. I can still move my head a little, but that's it. So when I say progression has slowed, I really don't have much more to lose, except for the breathing. And when that goes, we've got the vent so it won't be a dramatic change.
I was interviewed for a book on people facing hardship a couple of years ago, when I could still talk. It's being published next month. I haven't seen it but my story is one of dozens. It's called, The Society of Timid Souls. Psychology Today magazine is excerpting the book, and apparently mine is one of the stories they are featuring. We had a photographer come to our house last month and stay for many hours. He was looking for a pose that would reflect nobility. Unfortunately, neither Fran nor I am particularly noble, so it was an uphill battle. The issue comes out in two weeks, so we'll see what they came up with.
Well, that's the news from here. I'm writing this on a Dynavox with eyegaze using the Dasher program. It took about 45 minutes to write this, so it's kind of slow but very relaxing to use. Nice to see so many familiar names here!
