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A nice FLAIR (FLuid Attenuated Inversion Recovery) view from the not-too-distant past. Every abnormality you can see on this scan (and there is more than one!) is asymptomatic at present. Alongside is a picture of me walking the walls at Fremont Studios, a sign of a damaged brain.
Not even vaguely on-topic, sorry. I'll do something more appropriate to an MSDN blog sometime soon. Probably. Well, maybe...
Prognosis.
The definition is [almost deceptively] simple: "a medical opinion as to the likely course and outcome of a disease".
People are often curious about my prognosis.
For the most part they don't ask, mainly because having curiosity does not necessarily give one any actual words with which to ask. There simply no delicate way to pose the question.
I honestly don't spend very much time letting people off the hook here, even when I know what they are doing. Because I don't tend to think of my disease as a conversation point for clearing up the curiosity of others.
Though there are times when a person can have a more practical reason for wanting to know.
A more personal one.
Just recently one of those did come up, and as I realized it and decided to help her I suddenly realized I had the same problem: I didn't really know a smooth way to discuss it, either.
This made me think about my Blog, a place where I have worked out such problems many times over the past few years, sharing all kinds of information with some of my closest strangers. And in my stumbling, Columbo-esque manner solve the problem by communicating the idea. And thus I decided to try this technique again on this new "prognosis" problem.
Ready? Bored yet?
To add a bit more relevance to the matter than to only people who may or may not want to date me, I'll start with the broader question, as it applies to anyone with multiple sclerosis. I'll get specific later on, thus giving a broad framework and then explaining where I fit within said framework.
I'll start by describing four very broad categories. Mine are not the exactly same that the National Multiple Sclerosis Society uses (you can see them described here), as I find their classifications kind of useless for these purposes (though theirs can be useful for other purposes) and thus I'll put my own out there:
Now every single case starts as Category 1 until and unless there is at point symptoms, and a significant number of people in Category 3 will slip into Category 4 within 10-15 years, and a lot of people who start in Category 1 and ignore their symptoms until later in life and thus appear to slip into Category 4 with no diagnosed stop in Category 3, the kinds of issue that contributes to the (in my opinion unnecessary) "secondary progressive" and "progressive relapsing" and other subtypes often described -- just looking for names to put atop different slides into or out of the various types.
If you just take it as read that these four types are just major groupings that have unique characteristics and that most people will fall into more than one category over the course of the disease, sometimes even more than one at a time, then these other descriptions are not nearly as important - they are just attempts to give some of the real world cases actual descriptive terms. Not an evil idea, but given the situations are seldom as helpful with prognosis (for example progressive MS is often said to have more rapid onset than relapsing-remitting, but the nature of a progressive case undiagnosed until it becomes progressive is often not distinguishable from a progressive diagnosis later in life such that they and probably are often the same thing.
So where am I?
Well I first got what would later become MS in childhood, so from whenever that was until at least 1991 I was in Category 1, and then with my first exacerbation was in Category 3. There was later on some doubt that the diagnosis was right but eventually I was firmly in Category 3.
Some time between 2003 and 2006 I started to become much more a Category 4 person, until finally I was no longer having exacerbations and was definitely just a Category 4 person.
So the time between childhood and 2003 would be when the overall disease was slowly getting worse even though most of the time I was asymptomatic and even when I was symptomatic it was only episodically so.
Lots of MS plaques were initially asymptomatic but then would eventually make themselves known as different kinds of symptoms, and this went on for decades.
Then after that, the clock stopped; at this point I find new "families" of symptoms to be incredibly unlikely, and the shape of my disease now falls within the framework of my known problems just slowly getting worse rather than whole new areas of involvement showing up.
When in time between the early part of 2000 and the middle part I would be better thought of as moving from relapsing-remitting to secondary progressive to progressive relapsing to progressive is a bit like using a Crayola 64 box of crayons to build a section of rainbow going from blue to blue-green to green-blue to green. At some point the color changes, but the timing for arbitrarily putting words to discrete points on the continuum is not really all that important. They are just words that don't say much more about prognosis than could be gleaned by Category 3 being less in control and Category 4 being more so.
Thus now, as I sit in my cool wheelchair (that iBot) I feel like I understand my MS and its course for the future more clearly than I ever have in the past.
I know that when very ill from other diseases (even sub-clinically, such as the time I believe I had A1N1 after TechEd in Los Angeles earlier thus year) I can see some visual symptoms though I do not expect to ever go blind.
And I know that my left side will pretty much always be worse than my right, with coordination in my left hand continually getting worse and worse, enough that I'll depend more and more on one-handed texting and products like Dragon Dictate to use the computer (these are things I do now only when things get bad enough on a given day as I have previously mentioned).
And I know that my balance system will almost certainly continue to decline though now that I am in a wheelchair more and more I will notice this getting worse less and less (something I have also talked about before). At some point when the iBot stops working and can no longer be repaired even for fee (I know of several that are long out of warranty yet are still working so I expect to be running long after the 2013 warranty expiration) there will hopefully be an iBot-esque solution out there or I will have a rude [re-]awakening at some point.
And I know that there may well be some cognitive aspect to my disease though it can hard at times to separate the natural process of aging that causes everyone to feel some decline in this area from my own personal declines in this area as they have never been terribly severe and abilities lost tend to be ones that other people never had so it is hard to even talk about the area without making people listening get frustrated with me attributing to MS what they see as the normal process of aging. Thus I don't expect heavy cognitive impact until it would be entirely indistinguishable from being old and perhaps senile anyway. Though I might think I see it sooner than that, no one will believe me. :-)
The myriad of other symptoms from trigeminal neuralgia to somatic nervous system involvement leading to an almost RSD-like illness to loss of pain sensation to loss of temperature sensation to dysesthesias anywhere to my Lhermitte's sign to leg spams and so on I expect to mostly keep doing what they do now, which is move in and out of my life depending on external forces, but always on the thin edge of being there because they always are there, and perhaps trending downward over time.
My prognosis is somewhere in those preceding five paragraphs, such as it is. Doubtlessly if I am talking to someone who wanted to dance with me or go places with me or sleep next to me or whatnot then I'd fill in more of the relevant answers to soup questions between me and her as they in fact become soup questions between us.
Most of this blog that was about my own symptoms was in fact not answers to soup questions at all though like I was saying I wanted to work out how to describe it for the sake of people for whom it might be could be or will be at some point soup questions.
It was Friday afternoon when Santhosh (Santhosh Pillai, aka THE Santhosh, the guy who helped us with the collation story for Malayalam way back when) was asking a question. The question was:
Hi: Is there an updated version of this page http://www.microsoft.com/globaldev/keyboards/kbdinmal.htm available now that Malayalam has Atomic Chillus in Unicode 5.1? ThanksSanthosh
Hi:
Is there an updated version of this page http://www.microsoft.com/globaldev/keyboards/kbdinmal.htm available now that Malayalam has Atomic Chillus in Unicode 5.1?
ThanksSanthosh
Interesting.... though of course the real underlying question should be more about the keyboard layout(s) in Windows -- the website is just a description of the set of layouts that are installed in the operating system.
Updating the web site (the actual website, I mean - not the old one we're talking about here!) is a separate matter, but that can't ever happen until/unless the thing the site is meant to be described is updated.
Now back in the old days, there was a time that I was one of the people Microsoft sent to Unicode Technical Committee meetings, one of the people who came back from those meetings working on how and when to make updates to Windows, sometimes the person who made the actual updates to the keyboard layouts, and always the person who checked in the final layouts to the product.
In those days, answering this question would have simply been an act of recollection -- remembering the salient details of
but now things are different.
The Malayalam Chillu debate was going on strong while I was still involved with Unicode, though no final decisions had been made. And whether or not a need existed to include atomic characters for these entities was a fairly central question that would have to be solved before anyone discussed what product changes would be needed and when.
But other people were minding those stores, I was doing other things.
So to answer Santhosh's question, I did it the old-fashioned way - I looked at the product to see what was there.
First, I started in Character Map. I knew the fonts would be updated (Peter Constable was the one who explained to me how the Chillus worked way back when this all first started in Unicode years ago), so I wanted to look and see if there were any characters that were in the font but not in the Charmap list of names, like this one:
Indeed, there are 17 of them if you include the atomic Chillus, the ones added for Sanskrit, the symbols, the signs, and so on:
Then I handed each one to LCMapString one at a time. None of them had weight in Vista but all of them have an assigned weight in Windows 7 (some as numbers, some as symbols, some as letters -- kine of what you might expect by looking at the list).
Okay, good so far -- just no updated character list in Character Map. Unfortunate, but hardly tragic, as the sadness over not seeing the name in the lower left hand corner of that dialog is quickly mitigated by the character's presence in the font itself! :-)
The keyboard story was less fortunate.
I loaded up the one and only keyboard layout in MSKLC:
took a quick look at the keyboard, and then saved it out as a KLC file looking at code points in case I missed anything.
They aren't there.
Oops.
My first reaction was that somebody must have messed up, been asleep at the switch, etc.
But then I realized that was how everyone felt whenever they came to me because of something they perceived as an omission or bug. Knowing more of the underlying infrastructure does not make me any more psychic than the people who used to come to me -- I cannot read the minds or intents of the owners.
Maybe the update was not so easy to do. The Character Map thing is an obvious omission, but that is just a small bug on someone to get it updated.
The keyboard layout is the complicated one, of course. The layout is based on the INSCRIPT standards coming out of India, and although adding the letters would not have been unreasonable, there are two sides to that story and there may well have been reasons not to add them, too.
Collation beyond the "some weight" question is an interesting one; ideally it would be handled with equivalences the way we did Romanian with the comma below/cedilla below.
Grabbing the table from the Unicode 5.1 update:
Ok, looking at the weights of the first five entries in that table:
They don't match. I'd have to see what else is in the Malayalam table to know if it is only the equivalence that wasn't done (there might be actual ordering issues also) but I can't tell for sure (I have my hands full trying to learn Tamil and Bengali!). Offhand the weights never look to far from each other, so perhaps it was just a conscious decision to not support the equivalance....
I honestly don't know the answer to any of the questions I posed above, but I can probably ask a question or two of some people next week (post re-org I'm not 100% sure owns all this stuff now, so it could take me some time to track down who to ask!).
But either way there are at a mimimum a few bugs that I found in all this; I'll talk to some testers I know down the hall about those ones even sooner.
As I said in the title, the two most important components of letting go and moving on are (1) letting go and (2) moving on. But I'm likely to get curious now and again about how things are going....