Everyone is over for pizza and gaming. We had another enormous dragon battle with fire and sword and Catholics with rifles, secret passageways, and phrases like "vengeance shall be mine!" or "I burst out of the door, covered in my mother's blood" or "Well, who wouldn't be frightened, when the secret mastermind running all this has been... Hark! What's that!" ... ghosts, revolution, scary shamans, all on the island of Jeju around 1864. The councillor of our small town has been slain! People are proposing various leaders for our movement -- zdashamber's character Gunpowder, or Bob's character Mi-Sook, maybe the Admiral, or China Lee as a military leader. zdashamber cracked me up afterwards by peering at my book and going "Aw right! zepplins! No, wait, shirtless men on zepplins!"
I found the hydrotherapy pool in the hospital close by (in real life, not in our game). $120 for 4 months and it's open for free messing around all day on weekdays. It's not swimmable but I don't need that - just a bit of kicking and doing range of motion and stretching in the water, maybe some walking if I can manage it. Score!
The neuromancer today was fairly kind and answered all my million questions. I came in with a printout marked up and took notes. He explained how he got to PLS but that MS is also likely and while it does not fit as neatly as PLS does at the moment it might fit better after we look at more MRIs and other tests. I have to say I think MS is way more likely. There's like 500 people in the US who have primary lateral sclerosis and more like 400,000 with MS. So we will see what we see on Tuesday. He said I should be feeling a bit stressed and anxious right around now and that pressure of uncertain diagnosis will likely be around for a few weeks. That I should be active, and yet rest; educate myself about possibilities, but not worry or fret; and then he signed all my forms for physical therapy and pools and parking thingies. He said I should go on short term disability for maybe 4-6 weeks. It will take that long to figure out diagnosis and get things going and if I have MS I will need some treatment, drugs, etc. Also he said it was okay to go off the Lyrica. I would rather try going back to the pain than feel my mind all fuzzy and my arms too weak for me to do much. So, no Lyrica tonight.
MS fits better in that I had a long period of remission and more of a remission and relapse pattern where I might have remyelinated.
I was very interested to see the Kurtze Expanded Disability Scale on this set of pages on MS. Those scales are really useful in trying to think about what's going on over time.
Here's that table, hope it's fair use
Disability Status Scale
|1.0||No disability, minimal|
signs in one FS
|1.5||No disability, minimal|
signs in more than one FS
in one FS
in one FS or minimal disability in two FS
in one FS, or mild disability in three or four FS. Fully ambulatory
but with moderate disability in one FS and more than minimal disability
in several others
without aid, self-sufficient, up and about some 12 hours a day despite
relatively severe disability; able to walk without aid or rest some 500
without aid, up and about much of the day, able to work a full day, may
otherwise have some limitation of full activity or require minimal assistance;
characterized by relatively severe disability; able to walk without aid
or rest some 300 meters.
aid or rest for about 200 meters; disability severe enough to impair full
daily activities (work a full day without special provisions)
aid or rest for about 100 meters; disability severe enough to preclude
full daily activities
unilateral constant assistance (cane, crutch, brace) required to walk about
100 meters with or without resting
assistance (canes, crutches, braces) required to walk about 20 meters without
|7.0||Unable to walk beyond|
approximately five meters even with aid, essentially restricted to wheelchair;
wheels self in standard wheelchair and transfers alone; up and about in
wheelchair some 12 hours a day
|7.5||Unable to take more|
than a few steps; restricted to wheelchair; may need aid in transfer; wheels
self but cannot carry on in standard wheelchair a full day; May require
to bed or chair or perambulated in wheelchair, but may be out of bed itself
much of the day; retains many self-care functions; generally has effective
use of arms
to bed much of day; has some effective use of arms retains some self care
|9.0||Confined to bed;
can still communicate and eat.
bed patient; unable to communicate effectively or eat/swallow
I would say that this December and January I was a 1.0 on that scale. By February I was maybe a 2, limping, hurting, tired, but mostly hiding it. Since then I've been back and forth between a 6.0 and a 7.0. Maybe I was getting even to the 5.5 level, which was very cheering! Up to 7.0, it's a level of disability I know very well how to cope with. I am for the last couple of weeks at a 7.5, an abrupt and scary change.
I could chart out the last few years with ups and downs on that scale; it might be interesting. Charted with pain added it would be even more useful.
update Sat. morning - I'm walking a few steps, feeling way less weak, more clear-headed. Going off the Lyrica was a good idea!