A Night Out

The ALS Association invited me and Rob to a dinner on Friday night. They had a research summit in San Francisco last week, so we were prepared to dine with scientists, doctors, and researchers, many of the great minds hard at work on the problem that is ALS.

Rob and I don’t go out a ton. We tried to do date night for a while, but our idea of a truly relaxing night is sitting on the couch, drinking wine and watching Breaking Bad. I never wear makeup to sit on the couch and watch Breaking Bad.

Putting on makeup is an interesting challenge these days. I can still do it alone, but it’s shaky. I usually end up with mascara in several places that don’t involve my eyelashes, and I keep a pack of baby wipes in my bathroom to correct all of my mistakes. I don’t think the average person would know that upon looking at my face afterwards, and I’m content to keep doing it solo for now. It’s become almost meditative, more artful than it ever was for me. Slowly, slowly painting. Taking breaks for cramping fingers. Putting on the face of someone who wants to project strength, health, and the illusion of sleep-filled nights. Read More>

|Categories: Cure, Doctors, Drugs, Research | Tags: , , , , , , , , , | Permalink

Speed4Rich

There is a new Face of ALS on the site today. Rich Pollock, a recently diagnosed father and husband, shares the story of finding out he had ALS and his thoughts on how to live with it.

Rich writes about the tests that he endured—many of them multiple times. I’d like to explain a bit about Electromyography (EMG), for those of you who haven’t experienced that particular joy. There are two parts to it, and I’ll keep this simple: In one part, they stick thin needles into your body and move them around, and in the other part, they give you electric shocks.

What, that doesn’t sound fun?

The tests are designed to find out how quickly your nerves are conducting electrical impulses and if there is any weakness in your muscles. There is a lot of data collected, but if the doctors find fibrillations or “fibs”, it’s not good news. Read More>

|Categories: Diagnosis, Doctors, Progression | Tags: , , , | Permalink

Monday Morning

Rob gets up first, and I hear the coffee machine crunching beans, such a loud sound inside our otherwise silent house. But familiar and comforting, at the same time, and I don’t even drink coffee. We’ve been in our new home for almost a year, and it’s so quiet here, unlike any other neighborhood we’ve ever lived in. I bury one ear deeper into my pillow. I had to wake Rob up twice last night to help me roll over and get my legs into a more comfortable position. We’re tired.

Scarlett is tired. She’s been having nightmares this week, her yells the sound that punctuates the night. I know there’s wind blowing outside, I can see the trees moving, but all I hear is my daughter shouting “NO!” I want to get up and go to her, but the first issue with that is, of course, that I can’t physically get out of bed on my own. The second issue is that, after a week of Rob going in and trying to calm her down, we’ve decided to try not going in. And it works. This time, she settles quickly.

Night terrors. So, at four years old, she has things that terrorize her. I could read a lot into that, but I hear it’s pretty normal, and I have enough to worry about. Unless things get weird, we’re going to assume the nightmares come with the territory of having a child. She is still sheltered from the harsher realities of ALS, for now. Read More>

|Categories: Life, Parenting, Relationships | Tags: , , | Permalink