Diagnosis: amyotrophic lateral sclerosis

Here’s what’s got me upset. About two months ago, my mom started having trouble with speaking. It’s gotten worse, and she has trouble swallowing sometimes now too. She’s been to see the doctors and they mentioned a couple of possible causes. None of them were pleasant, but most were fairly benign. So my mom told me.

I freaked out a bit when I first heard her with the lisp. She sounds like she’s had a stroke or down’s syndrome. But she was upbeat and said it wasn’t any big deal. This was before the conversations talked about in the previous paragraph.

My mom let me know today though that the preliminary diagnosis is amyotrophic lateral sclerosis. Also known as A.L.S. or Lou Gehrig’s disease.

It’s nearly always fatal, though around 10% of patients live around 10 years. There’s no cure. 50% of patients die within 18 months of diagnosis. 25% of A.L.S. patients have a form called bulbar A.L.S., which is the form that attacks the speech functions first. It’s known that bulbar A.L.S. has a faster progression than limb-onset A.L.S.

I’ll probably write about it here. I do not want to answer incessant questions about how me or my mom are doing, or deal with a billion I’m sorry to hear thats. Even if it’s just one question from a single person, it may come after I’ve answered the same question for another 10 people. I don’t want people to have to walk on eggshells around me, but please get attuned quickly to my body language around this. Yeah, it’s all kind of contradictory. Sorry, when I’m upset I’m even more difficult than normal. I could use a lot of support, but that can be best accomplished by just including me in normal activities a lot and just letting me lead any conversations around the topic. If I’m comfortable talking about it, I’ll bring it up. If not, be circumspect. I may need to talk then too, but it’ll be rough going.

Lastly, please don’t talk about this with anyone who doesn’t already know for the moment. In particular, isn’t on this filter. If my mom hasn’t told her yet, I don’t want her hearing through the grapevine. I suspect they’ve already talked, but I forgot to ask. Probably after Easter, all the people who need to know directly will, and I’ll open this and future entries up.

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