Tag Archives: faces of als

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

Speed4Rebecca

This will sound crazy, but I was looking forward to writing this post. Yes, I’m introducing a new Face of ALS, and that sucks. It’s always hard to do, and every single time, I wish I knew these people for a reason other than our ALS connection.

But this woman you’re about to meet is pretty amazing. Rebecca Hayden was diagnosed with ALS in 2012. At this point in her progression, she types with her eyes and requires assistance with nearly everything, and yet, she is often able to keep things light and see the comedy in her circumstances.

If you don’t have ALS or aren’t as progressed as Rebecca, her posts might be a little shocking. With any serious illness, there are hard moments and there are tears, but it’s important to remember that even with all the changes and challenges, this is still someone’s life. And there is always joy to be found. Rebecca is really good at finding it, with an incredible support team of friends and family to help her. “We laugh a lot,” she wrote to me. Read More>

|Categories: Faces, Life, Progression | 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