Category Archives: Diagnosis

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.

—————————

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

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