Tag: a.l.s.

Plans

Plans for today

  • Clean my apartment
  • Dinner with mom
  • Edward Scissorhands with mom

Plans for tomorrow

  • Shop for pie ingredients
  • Make pie
  • Pie Night

Botox!

I ordered an ALS book and it arrived today. It’s been oddly
comforting reading the information despite the lack of good news
contained therein. Know a lot more what to expect. Still only
halfway through though.

One thing is that ALS patients have to consciously swallow or risk
choking on their own saliva. One treatment that is helpful is Botox
injections into the saliva gland to reduce saliva production.

18 months?

So there’s a 50% chance my mom will be dead inside of 18 months. I’m gonna try like hell not to let it upset me.

But this brings up a question. During my visit today, my mom said something along the lines that she probably wasn’t going to get much flying in anymore. Even if she lives for some time, she’s going to be severely handicapped. If the diagnosis holds, she’s got limited time to do things.

I don’t believe in living each day as if it’s your last. It’s a nice cliché. But if I lived today as if it were my last, I would make no effort to open a bookstore. This doesn’t mean that my bookstore isn’t up there in priority. If I had only one day to live, I’d be trying to get with all the hot-or-good-in-bed girls possible, and blowing whatever i had left on massive drugs. It would be fun, and I could fit it in 24 hours. With a lifetime ahead of me, there’s so much more that I could do that I would enjoy more. The general idea though has some value.

Given the context, I couldn’t really ask my mom today what she wants to do. I would like to try to make her time left as enjoyable as possible. She’s never been one to want to see the world. Perhaps there’s something in it she does want to see. Aside from spending time with family, I don’t know to what she’ll want to devote her time. If I were in that spot, I would definitely see a lot of the world. See a lot more concerts, though I suppose I could enjoy concerts even after the paralysis stage, so that wouldn’t be as much of a priority as going to remote places. I’d definitely try to get on Jeopardy. Maybe I’d attempt to write a novel. (I wonder if my mom would like to go to Mass at the Vatican? I should ask her that.) I wouldn’t be trying to get in any extreme events. Definitely add a few more tattoos. Plan to do so, but haven’t got a good idea of what I want. I think I’d be less picky if I knew I had less time. Definitely I would try to get in some exquisite food. I know shit about famous restaurants, but I think I’d find out and go try one or two.

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.