Category Archives: Parenting

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>

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

Guest Post: A Letter from Kristen

This letter came to me last week, and I had to ask Kristen if I could post it. Read it and you’ll understand why.

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Confession: I feel super awkward writing to someone I don’t know. This is the first time I’ve ever done it, and I wish it didn’t have to be because of ALS, but here we go. ALS is making me do things I’ve never done before, and I’m not even the one who’s got it.

I’m Kristen, from Canada…living in England…with my German husband. At 40, he was diagnosed with ALS. Lower-limb onset. Slow progression. That was about a year and a half ago.

Most people can remember the exact day of diagnosis. I can’t. We had a 3-year-old and 6-month-old twins. I was so utterly sleep deprived that I can’t tell you anything about that day, other than I was convinced that my husband was absolutely fine, and didn’t even go to the doctor’s appointment with him. That’s how confident I felt that he was dealing with a quirky neurological situation, rather than a diagnosis with a “life expectancy” attached.

I hate that day, whenever it was. Read More>

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

A Day at School

It was a big day here yesterday, which you would have known if you’d seen me, because I was wearing lipstick. Like, actual lipstick, not just the bacon chapstick I slather on daily. In case you think that was a joke, that was not a joke.

Do I lose credibility immediately upon admitting that my “big” morning involved volunteering for the Carnevale party at Scarlett’s school? I just thought the children would appreciate that bit of extra makeup effort. I also wore a multicolored beaded necklace for them, because I am nothing if not festive. Although I am evidently not as festive as one of the other moms there, who was dressed head to toe as Queen Elsa.

I have always been the kind of mom who wants to be very involved at school, but after ALS sat me down for good, I was certain my classroom volunteering days were over. I normally just watch the email requests go by, thinking I won’t be helpful, best to let someone else do it. But last week our room parent sent a note saying she still needed help, and instead of blowing it off again, I thought, well, why not me? Read More>

|Categories: Life, Parenting, Progression, Vanity | Tags: , , , | Permalink