Week 96 Ocrelizumab study visit

So, yesterday drove up to Phx to see my neuroimmunologist for week 96 of the clinical trial I'm in. Hard to believe it's been so long! And I have to say, I would really recommend the next clinical trial of it, a Phase III which I may not be able to be in (long story). It's been a truly amazing drug, and really very helpful to me and others, apparently and anecdotally. Zip new lesions in over a year and a half. The new study is up at clinicaltrials.gov, but they're not recruiting just yet.

So that's all the good news, and physically I seem to be okay, but my EDSS score went to an all-time high of 2 (I know, not a lot, but still) because my "mentation" impact was higher than usual. Normally I run a 1, but this fuzziness spoken of in my last post hit it enough so that rather than a "1b" or 1.5, my score was a 2. My lovely study coordinator was nervous, but my neuro wasn't at all. Given I'd just finished teaching for the year, a year I was completely overloaded with work, he thought it was not at all odd to find cognitive issues arising.

I asked and he said he would set up neuropsychological testing at the same hospital, and he said "It would be good for you to see. They're meant for an average, but I don't think yo're all that average. You will be surprised." How nice! :p. So, maybe it will make me feel all better to note that my cognitive functions aren't all melting ala the witch/water combo in the Wizard of Oz.

Oh well! I still feel okay, but annoyed by the bits of spelling I seem to be missing. I do have Dragon Naturally Speaking, but with luck I'll just be able to not worry so much abotu all that for a couple of months. What a relief!

the "sqeauky" wheel.."sqaueky".. SQUEAKY!

As some may have figured out, I profess English and have since I can remember considered myself an excellent speller. For real.

So yesterday, why did it take me half a minute to spell "squeaky"? Yeah, 3 vowels in a row, but STILL. Maybe because I was using a cell-phone keyboard? But then I also struggled with another word yesterday, something beginning with a "M". Hmm.

Right about the time I was going to go the hospital to eventually have surgery and later be diagnosed with MS, one of the great frustrations, more so than the cane use, was a feeling I'd lost some words. Not misplaced, not stuttering, but really simply just lost some words I'd known my whole life. Given I've been reading since about 3 and writing just about as long, this was disturbing. Noticeable to everyone? Of course not. With half my brain cells gone I'd probably still have a bigger vocabulary than many. VAST. ENORMOUS. Nay, MONSTROUS. I don't even go "uhh" anymore in speech because I thought a long time back it sounded stupid. So I just pause, and normally not for more than a half-second, until I find the word.

I never lost the ability to comprehend words I knew, but my typing was getting poor and I was struggling a little more for everyday words. At the time, it was the close of the school year in December, and I was both falling down (massive lesions on the motor cortices on both sides on my brain) and stumbling over words. I know I looked bad physically, but I felt much worse mentally-- I was not at all certain what had befallen my brain. I mean, come on-- I've not only got a degree or three, but I REALLY KNOW WORDS!

At the hospital in Phoenix, I graded my students' work and turned in grades. I don't remember what I read or how the papers were. Of course, I was kinda focused on my own health at the time, though time itself was a wee fuzzy. It's still hard to believe I did any work there.

After I got back, and read through all my doctor's reports, one stood out. It was from my neurosurgeon, a very nice, brilliant man, who noted "She is actually quite fluent, but it is obvious she is frustrated by [losing words]". Spot on! My best friends would probably have picked up on it, but neither hubby of 3 years nor colleagues really knew enough about me to see subtle signs.

On and off I've had some spelling issues when typing, but not all that noticeable. I do get nervous and angsty when my brain seems to be tripping over itself when trying to locate the right word. I wonder sometimes if words are individually stored or if synapses have to make multiple connections from which words derive. I would imagine the latter, but still-- even if they were individually stored I could have all the words in English in my head and still have a LOT of space for other brain needs.

I don't think I've had a bad relapse, but my paroxysmal (spelled that in one go!) symptoms pop up with about monthly frequency. I'm not sure how much my motor cortex was damaged, nor if I struggle with spelling because my hands have been affected and usually the problem is with written English (or typed) and the motor and mental skills are being jumbled.

But it's definitely scary, possibly the most unnerving of the MS issues. I don't give a rat's hiney about ending up in a wheelchair, though I imagine that will bring issues of its own. I do care about semi-perceptible brain slowing, the kind of thing that won't descend into dementia but will into a vague, "hmm... I know this... I KNOW this" feeling of being just on the wrong side of the right word.

Hmmm. These are the things that try my soul, and certainly (hadda work at that word 2x!) my patience. Unfortunately, few get it. That's the sucky, all-alone part feeling of MS, which I know some of my colleagues in the MS-universe hear me on.

May all your "squeaky" wheels be greased!

MS + TV + MD, = BS

Well, finally "House MD" explores more completely multiple sclerosis-- via, of course, the MOST RARE AND AGGRESSIVE FORM, so-called Marburg MS. Not only does our "hero", who nails himself to a cross per a promise between himself and God to spare his daughter from glioblastoma (that's a whole 'nother thing), have multiple sclerosis, but he has to have marburg, and he has to be offered only one of the potential treatments, and that is stem-cell transplantation. Because it is labeled in the show "embroyonic", the man has difficulty with this given his deep faith, so of course House tricks him. Click on the title of this post to go to the tv.com site.

I found the show a little weak, and lately as a whole the series has been repetitive and kind of slow-- not a lot of development and the "classic" only-speak-truth newbie vs House's "everybody lies, and apparently all the time" class is quite dull.

HOWEVER-- this was a moment where the writers could have demonstrated some sense in presenting and treating MS. That the guy grins maniacally (Pseudo PseudoBulbar Affect?) at all times in the throes of his Marburg-ness was ill done, IMO. I can understand why they chose the most dramatically effective one, but then it becomes a tool for House Vs God again. No discussion of potential other treatments, just the one seemingly most poised for dramatic effect-- and why would it have to be embryonic, other than for dramatic emphasis? Would Alemtizumab or Mitoxantrone be so much less dramatic? Would he have said no to them?

ARG! Weak writing, weak show for me for several reasons. Of course, now I do wonder who thinks MS is instantly, always fatal now. Well, such is TV-life.

Let's not even TALK about how the guy happens to be Latino. Why is it always my peeps who have the god-issues? (Yeah, I'm generalizing, damn it, and I have a license to.)

The autumnal ravings of a near-insomniac

Well, here it is, my favorite time of year, and I just so barkingly want winter to come so I can get a break from my job. For whatever reason-- OH! I know, the fact I didn't really get a vacation/ break this year from work-- I just am over the educational phenomenon in the US. It's been a bit mind-numbing lately, and also affected by my distraction due to Bear getting a BAHA implant underway.

Oh yeah. We are a multi-disability household! In the most recent test, his hearing is down to about 10% in one ear, with comprehension about as bad, and his left ear is at 40% hearing loss. The BAHA (Bone Anchored Hearing Aid) sends the sound vibrating through his skull to his other ear, which has a conventional hearing aid. It's not a cochlear implant, but if things get worse it will become one.
How the BAHA works

It's a really interesting idea, even though slightly less than ultimate technology really. But get this-- his BAHA will have a plug in for a MP3 player! OMG!

The bad part is it's quite gross-looking. The surgery involves ***WARNING GRAPHIC!*** cutting a slit behind the bad ear, lifting the flap to remove all the follicles, scraping all the tissue and muscle out down to the bone, and drilling a titanium screw a bit into the skull so it can osseointegrate, then kinda sliding it all back together and attaching an abutment to the site, then bandaging it all up.

Pic of a well-healed site

So needless, perhaps, to say I'm alternating between basket case and mental defective, and really would like very little more than getting the hell out of my job for a few months. Of course, I'll probably end up teaching something, because we still need the money-- one of the big reasons to deplete the savings for the BAHA is that Bear really is unemployable without proper hearing, but likely not disabled enough for any type of disability and he's not of retirement age. Sigh.

So yeah. Good news is that the last MRI didn't show new lesions, just old scars. I have since decided "Scars on my Brain" will be my autobiography title. Bad news is that I still haven't found a way back to any form of my center or any state of relaxation and calmness. It's insane here, and I struggle to not dislike it so much more each day. It would be best if I cared less, but that's hard to do for me. ARG!

Why can't I lose weight rather than sleep, dammit?

Straw, meet camel!

So the last few weeks have been quite MS-centric, with a dull headache for four weeks now, one PCP who still thinks it's a "localized headache", my neuros who are trying to get MRIs and MRAs done (that last for an aneuyrsm), blurry left eye vision with no apparent physical cause, and some shakes.

You know, typical crap.

Then, to top off weeks of hell at work, I get a call from my oldest brother that, following a serious manic episode at the end of a long week of mania, my sister ended up in the emergency room and from there went to a "center". She's bipolar.

Someone said "damn, she can't let you get the last word on anything!" I laughed, because I still think my melting brain beats her chemically unbalanced one any day. But honestly, I'm still not sure what to do with this. It has hit me harder than my own MS diagnosis. She was there with me, and we both did the thing my family does-- "uh... so okay, what do we do now?"

For me, research helps me think through what is happening. Everything I read helps to explain a lot about my sister, if hindsight is 20/20. Sure, she'll be on meds for the rest of her life, likely, but I'm not worried about that. I guess, I'm worried about how it will feel to know my sister isn't really totally capable of being leaned on. I haven't leaned on her for much lately, but in the past, especially after our mom died, we spoke a lot. I think this last time I spoke to her I let my own impatience get in the way and disagreed too much while she was still a bit manic.

Oh dear. Why is there so little effort, compared to things like cancer, say, to help resolve the foundational problems of the brain? I mean, I know we only have our brain to know our brain with, but the brain just hasn't been made sexy enough. We have no ribbon or bracelet, and yet... and yet.

Yeah, I buy pink. I wear my orange MS band. I'll wear a bipolar band if one exists, but the thing about issues of the brain is that somehow we seem so afraid to share and talk. Everyone seems to have an opinion, but we don't talk about what it would mean to really explore the brain, map out some diseases through PET scans, etc.

So, let's really think about a brain symbol campaign! How about shirts with diseased brains on them? A few with MS lesions? I'll offer my MRI scans!

The carnival of mania, mistrust, misrule, and MS begins anew!

Lovely idea!
Yes, that's right! Classes have started again and after a full year of sloggin' through research on retention, success, assessment, administrivia, and oh yeah some other teaching, I'm ready to put on the armor and go forth into academics. Or so I think.

Biggest freshperson class we've ever had, lots of lost students, lots of papers and online organizing-- always the same, really. I do like back-to-school time a lot-- something fresh and new and hopeful about seeing students excited about school. I will admit that college students aren't always that excited and some can be quite truculently silent (as some profs can be, myself included at times). I will admit that the closer they are to high school, the more aggressive they are in their desire to stand out by fitting into one crowd or another. I will also admit I wish I could have more Socratic dialogue and less paperwork.

On the other hand, it's a good job, and I do enjoy the teaching process. I love talking things out with students and figuring out how to help them best. Seeing lightbulbs go on in people's heads is a great reward!

Of course, with this comes the worry that my brain might short circuit again-- or was that a moment of blindness in my right eye? Will 126 degree heat index make it impossible to move? Will I start fluffing words again? WOE!

Yeah, I do worry about that a lot. My work is pretty much all mental, though some is simple endurance, and my brain needs to be pretty well oiled for me to do my job to my satisfaction. I'm hard on myself, but I'm hard on my kiddos too. Luckily so far my job's been okay with accommodations (like dr. appts during the work week!), but I personally feel a little less-than-spiffy. I'm sure it will all ratchet down, but good heavens.. what a job for a MSer to have!

The long sunny, it's too damn hot post

I really do hate the heat in Arizona, but having gone to Philadelphia a few weeks ago, I can officially say I think I hate humidity more.


Fortunately Yuma tends to have a whole lot of air-conditioned places, one of which ain't my home. Well, it doesn't seem that way. There's not a lot one can do without an industrial A/C when it's 118 outside-- again. I'm ensconced in my office and still have a fan blowing on me. Libraries and malls tend to get full quickly, as does the Wally-world. A couple of days ago I went to see Despicable Me in 3-D (didn't really need to see it in such, tho, great script), and for some reason right at the beginning it was warm in the theater. Isn't the reason people go to a movie to stay cool? Or did movies get good all of a sudden?

I digress. Despicable Me was very funny and smart, though the attitudinal kids annoyed me some. Most do. The minions, however, were a total blast!Click for Minions!!

That was probably the most social thing I've done lately-- went with Bear and friend n kid. Popcorn was nice, tho got a bit carried away with the white cheddar powder add-on. I don't really get out to flicks much, but netflix is my friend. I've been on all kinds of kicks, from Brit-com to classic. I do love some classic B/W films! So netflix allows me to be realllllly self-indulgent!

OK, still too damn hot but time to pretend other work is important rather than surfing the web. Ta!