I spent the afternoon helping my mom with her Dynavox DV4. It’s a speech device for when her ability to speak goes. At first we couldn’t get into the setup menus. Turns out the people who gave it to her had it set on a 1500 millisecond press time on the touch screen. So you had to touch an item for a second and a half and then wait another second and a half before anything happened. We just weren’t touching icons long enough, so it took us a long time before we were able to set up the device (including lowering the time needed to touch the screen).

One of the set up items was selecting the main screen. Most of them present tiles with icons that you touch to get it to say the word. some icons open sub-menus. And there are folders on the top that get you to different word sets. But my mom kind of liked one that had a full touch screen keyboard at the top with lots of buttons for various words and topics below. No pictures. It was fairly complicated. But we couldn’t figure out how to get that screen to actually say the words. There was no go key like other screens. Eventually though, we figured out that you have to press the rectangle with the typed words in it.

I have the device right now, so I can download the software updates for it. Also, I’m going to try to download other voices or fiddle with the ones that are there to try to get it to sound a bit more like mom.

She’s pretty overwhelmed with everything that’s going on. The person who is going to help coordinate her care isn’t really available for a few more weeks until she’s (the coordinator that is) done with a vacation. Her first A.L.S. clinic visit isn’t scheduled until late June I think, and my mom is trying to get some stuff set up before then because she feels like her symptoms are progressing pretty fast. But if she does visits before her clinic visit, she has to find all the various specialists she needs herself, rather than all in one place at the clinic. And also pay the co-pay for each of them individually.

Her symptoms are getting pretty bad fairly quickly. She’s gone from slurring her words when I first noticed to having a hard time swallowing sometimes. Now she can’t really chew, though she can bite soft food. That was a couple of weeks ago when I took her to Edward Scissorhands. Now she can’t move her lips either, and is having a hard time keeping even soft food going down.

Luckily, she hasn’t yet lost any dexterity in her hands or legs. Though she does get tired very quickly now.

One of the symptoms of A.L.S. is being prone to crying outbursts. So anything emotional tends to set her off. How much is just emotion from being in one of the suckiest situations possible and how much is added by the condition is unknown. But it makes things tough for her to deal with stuff, because she can’t hold off crying until after a conversation. Fine when dealing with loved ones, but when dealing with insurance or doctors or lawyers, it makes the interaction difficult.

She’s asked me to do some research into medicare and medigap insurance and compare that to her current insurance. Her current insurance is pretty good, but it doesn’t cover drugs. A.L.S. makes her eligible for Medicare. She could then use the drug coverage with that. However, she may not be taking drugs too much either. The only drug prescribed for A.L.S. extends lifespan by a couple of months. It also has the possibility of reducing the effect of her symptoms. But the latter is theoretical. She’s thinking about trying the drug out for a couple of months and seeing if it helps. So the question is, is the Medicare drug coverage worth switching, or is it better to stick with her current coverage where she’s already met the deductible for the year, but would have to pay full price for the drug (which she hasn’t decided for sure if she wants to take).

Those of my friends who work in medical billing, if you have any pointers for me I’d appreciate it. I can figure it out, but I’d love to save time.

So I’m going to do some research, then head up to Lynden Tuesday and Wednesday. Some of the decision will need for us to look in detail at her coverage and talk to the companies involved.

I put in my notice at Barnes and Noble two weeks ago. I told them that by the end of May I needed to be more of less off the schedule. (I won’t mind if they keep me on for the occasional shift here or there, but I don’t want anything regular for the time being.) Since most every in receiving has quit recently, they were glad I was able to give them a long time to find more people and be around to train them. Unfortunately, it looks as if I’ll need to accelerate the plan some. I’m scheduled for Wednesday, and they’ll need to deal without me that day. I won’t play the will someone please trade me shifts? game. They don’t pay enough to make that my responsibility. Next week on, they’ll need to schedule me no more than Tues-Thurs until the end of May. And I think I’m being pretty generous with this effort anyway. It’s an at-will state, so I could walk out on a moment’s notice.

I want to be able to spend time with my mom with no encumbrances.


Second opinion in. Mom still has A.L.S.
Edward Scissorhands at the 5th Ave sucked.
Tomorrow’s pie night is going to suck as well.

There were positives to the evening though. Played with Ilsa’s right nipple. Next time I need to pay attention to the left. Watched Lisa dance. Damn that girl has nice legs. Reminisced about old times with Augustine. One of the few people around who knew me back in the day.

Now, to bed. Early rising. Last minute cleaning. Getting pie fixings. Making pie. Waiting for people to arrive.


Plans for today

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

Plans for tomorrow

  • Shop for pie ingredients
  • Make pie
  • Pie Night


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.