Tag Archives: living with als

Driving Force

The first neurologist I ever saw was a 2nd-year resident who looked like a high school kid. I’ve blogged about him before; he’s the one who told me he thought I might have ALS after we’d known each other for 20 minutes. He’s the one who told me I might want to reconsider trying for a second child. I wouldn’t exactly call him a bad guy, but I don’t have a lot of fond memories from our time together.

One of the things he told me early on was that everything was going to get harder for me. Walking, stair climbing, driving. I was most concerned about the driving, and I pressed him on it. He assured me that my losses would be gradual, that it would never come down to me getting behind the wheel and being suddenly, surprisingly unable to operate the car safely. Don’t worry about that, he told me.

It’s funny, because it was likely the only reassuring thing he’d ever said to me, and it turned out to be a bunch of crap. Read More>

Things that Matter

Today I had this weird thought that maybe people think my whole life revolves around my ALS. Well, around that and around being a mom with ALS, because those are the things that I talk and write about the most. So I’m going to tell you some other stuff that I’ve been up to, because I don’t really want you to think that I write one line a day on Facebook and then kick back, streaming Scandal off Netflix until it’s time to pick up Scarlett at school. I do not do that. Ahem. I do not do that all of the time.

Once a week, I take an Italian lesson with a woman named Paola. Paola comes over and I make her a cup of coffee and we speak Italian for an hour. And sometimes we eat brownies because the lesson is at 9:30am and that is an outstanding time for chocolate. This means I have homework, so at other times during the week (usually the night before a lesson), I can be found studying Italian. Other times still, I can be found speaking to Scarlett in Italian and she can be found yelling “No Italian!” at me. Read More>