The more prosaic diary of what’s up

So I decided I’ll go to UCSF to their ALS clinic, and get a 2nd opinion or workup or whatever from them. They can use all the same tests and MRIs and stuff. I might just have to have an EMG – sounds like a somatosensory evoked potential is no picnic, but something like that will get done.

I walked a bit again today with crutches, and sat up a good part of the day. Went out to lunch with and Jo (I’m completely obsessed with this pho place in Deadwood and its totally delicious noodle soup) and then came back here to talk poetry with D. (lying on couch with an electric blanket) and THEN Rook and Moomin and I went to Jo’s house to do a little minor clearing up and moral support which I hope helped. It is a dreary thing to do alone, moving, even when you’re not having that feeling of salvaging from the wreck.

Rook took kids to our house, and then when Ep’s husband came over around 5 to drive Jo around town, they dropped her son and Eliz. off at my house too. Everyone played super peacefully with rocket launchers and “guns” that were actually my crutches, & then in elaborate gladatorial games with the tiny remote controlled cars from China, MC-ed by Eliz and fenced off by a coliseum of couch pillows. I watched from bed.

I thought I would miss the concert but then just in time all the kids got picked up. WHEW.

And what a fabulous feeling with my lap blanket tucked in around me, whooshing down the street in my new ultralight wheelchair, down the BRAND NEW RAMPS.

I’m very lucky…

It was all a bit exhausting, but I mostly stayed very warm. I’m hurting now despite baclofen. My left leg is spasming a lot tonight, mostly the calf and foot.

I have to say, that the feeling of trouble swallowing is more intense the last few days, and I never know if it is just in my mind… or if it is really worse. I guess if it gets really-really worse, I’ll know it. I have had increasing trouble in the past years with swallowing when I ‘m lying down or on my back. For example if getting a massage I have to turn on my side to swallow. I guess that is not quite normal? And much of the time I have to sort of think about swallowing food. I do it by leaning forward just a bit and stretching out my neck. Is that …. well, I know it must be odd, because I don’t remember ever thinking about it or noticing it before a couple of years ago. Can I just confess… I didn’t mention that to the neurologist even when he asked about swallowing difficulties.

I do think about it, and figure I will do a quick project to record myself reading more of my poems.

I haven’t really wanted to talk about that to anyone because it feels like it would make it more real and it makes me much too afraid.

They have programs where you record yourself saying like 1500 common words and phrases and then a speech synthesizer thingie digitizes it and can construct what you want to say from that. The software to do this has different moods so you can inflect things to be angry or happy or whatever.

Remind me to record some key phrases like “Shut the fuck up” and “OH GOD! HARDER!”


On the other hand I am not convinced it’s not all in my head and I don’t mean in the “upper motor neurons in brainstem” way of being all in my head.

You know the feeling of when your throat gets tight because you are super emotional? Like that.

Pilot and I had a nice talk yesterday and she filled me in on the acromegaly stuff which went along with the tumor. I didn’t realize that bit of it. She’s having a rough time over there, which I knew but didn’t really grasp. It’s funny to think of us in our next door houses, struggling. And I want to offer more solidarity in some way.

Meanwhile, I continue being absurdly happy. I get frustrated and scared and especially tired of being in bed. Not that I don’t love to be in bed. It’s just that when I have impulses to do something else, but can’t muster up the stamina, and bed is warm, and cold hurts like helll.

Rook’s parents are coming on Thursday!

I need to make a bunch more appointments and deal with medical things and faxing and insurance! And get food for xmas dinner, order a turkey or whatever! I feel like baking bread and cleaning the house! Instead I laid in bed all evening and watched “Hail the Conquering Hero” with Rook.

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One Response to “The more prosaic diary of what’s up”

  1. hazelbroom

    Okay, the bit about the speech synthesizer was REALLY FUNNY. I hope you guys can make it to the crab-o-rama on Friday! Bring whomever, it’s gonna be a blast.

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