Friday, April 07, 2006

msb-0011 Its not a free pass, dummy

You know, life sometimes mystifies me.

The episodes where I'm just blathering on have statistics that give me hope with their quick uptakes and heavy volume. (As I write this I'm approaching 900 total downloads.)

The episodes where I'm explaining what I'm trying to do with podcasting for special needs, like MS, MD, ALS and the rest of the alphabet soup of frailties that we're subject to, and offering a prize or a paying job to take hold of the mike... You must be mind readers, because nobody even bothers to download them. You're missing all the meaningfull stuff. Stuff that could help us all.

My subscriber statistics look like a crocodile's teeth.

Well, never mind.

Rome wasn't built in a day. I'm in this for the long haul, like my MS.

I'm promoting podcasting in the New Jersey chapters' MS Connection newsletter and I'm going to see about promoting it in the National MS Society's newsletter. (They're using MP3 but they haven't caught on to RSS [Real Simple Syndication,] or doing any video.)

Podcasting really is the magic bullet which turns the great media silence of being in an absolutely abject minority, merely one voice in twelve hundred, all clamouring for attention, into a channel where we are powerful, where our issues can be discussed and where information about MS products, services, news, views, reviews and interviews can be recorded, deposited, obtained, shared and kept up to date.

(Do I sound like an evangelist yet? I should. I have Marshall McLuhan to thank for my perspective on the media. :-)


I've just been reminded by my wife, Lee, that, yes, I have MS, but its not a free pass against getting anything else.

As I sit here with my second bad spring cold of the year, I have to admit she's absolutely right.

I feel like warmed over crap. I'm having to edit out all the snorting, sneezing, coughing and wheezing.

And it doesn't stop there. I've had "Montezuma's revenge." (I'm reminded of the Monty Python "Australian Table Wine" skit: "This is a fine emetic wine which really open up the sluices at both ends." Yeah; it got pretty gross.)

I am sure that my suspectibility to colds and other infections, like rosacia around my injection sites, is a side-effect of my use of Rebif, which depresses the immune system. Still, its better than an exacerbation.


I was more than half-serious about signing up for a drug trial acting on my suggestion of replacing the current self-injection drug delivery mechanism with an inhaler, just like most asthma drug are currently using, which would use the natural permeable membrane of my lungs to deliver the prions of Rebif directly into my blood stream; rather than depending on the limphatic system to deliver he drug.

Inhalation is what the tobacco industry has been using to deliver nicotine into our bloodstreams for hundreds of years. And crack cocaine uses the same mechanism.

Why can't we learn something from all the pot-heads out there? Why can't we learn what the illicit drug dealers out there already know? Lungs are a good drug delivery system.


I've just finished watching an extremely depressing PBS special about "David Vetter", the "Boy in the Bubble" who had no immune system. He died from having none, I have one that has tried to kill me every fifteen years or so. (Mine may suck, and bite, but its still better that his was, or make that wasnt.)

I also hate the thought of a colonoscopy. Sue me. I'm 53 and due for one but its not something that I'm in a hurry to do.

Its not a road I care to go down, though my supper on its way there now.

Sorry, but either I laugh or I cry, and I'd rather find the humor in any situation. I dont care if indomitable good spirits are a side effect of having MS. I'm glad to have them.

Worse than that, I can see (not smell though thankfully,) what would draw a researcher to study, uh, shit. (Yeah, I know the Latin term for it, feces, but we're all adults here and we're not bound by any FCC regulation, so I say shit. And if you don't like it ... tough shit!)

Digestion is a fascinating process. There is all sorts of chemical magic happening to my dinner as is travels from the plate to the bowl. (Actually, Lee says that its a sign that we're getting old. The movements we care about go from the ballet to the bowel.)

If I think about it, how does a piece of brocolli go from being raw food, a living plant, through all those processes?:
  • mastication (the chewing of my food, involving volitional nerves,)
  • saporation (the tasting of my food, a sensory experience,) (Okay, I'm not too sure of the existance of the actual term but sapor is Latin for taste.)
  • gluttination (the swallowing of my food, involving involuntary nerves,)
  • digestion (the actual breaking down of my food into simpler chemical components through the use of acids secreted by my stomach lining, involving a whole lot of involuntary nerves,)
  • digestion part deux, (the absorbtion of these simpler compounds by my intestines, both small and large, involving nerves controlling the passage of the materiel [it no longer resembles brocolli at this point,])
  • elimination (involving a great deal of nervous activity to coordinate the timing of things so I don't embarrass myself.)
All that chemical and nervous activity and I don't really care for broccoli all that much.

Our bodies are wonderous machines really. And as machines they are fundamentally knowable. Which is why I have a real belief that MS will be conquered and its mechanisms will be understood.


(The phrases I despise the most in the world are "Its a mystery" in the mouth of a priest, or "It is the will of Allah" from the beard of an immam, or any other utterance denoting intellectual lazyness and the kind of flabby thinking which denotes a willfull lack of intellectual resources and a condemnation of curiosity.

Religion's really got a lot to answer for, but its science that actually comes up with replies.

Religion is really the anti-media. They only have the one book, all other books are bad for you because you might get ideas, and you are only allowed to memorize it not interpret it. That's to be left to a synod. You're only ever allowed to follow along in the book. [Sorry for the aside but its one of those Qu├ębecois remnants of my personality that crops up from time to time.])


Now our minds are a diffferent sort of neurological question.

Julian Jaynes, in "The Origin of Consciousness in the Breakdown of the Bicameral Mind" thought that the evolution of the carpus callosom was at the root of being human. (What can I say? I had weird reading tastes as a child and as a teenager and a quick look at my library tells me that they didn't improve all that much. :-) Before that we were merely reactive and animal in our relationship with the world.

Having owned my dog and cat and knowing first-hand how willfull they can be, I can sort of see his point. You don't need a membership in the human race to behave alternatively like a saint loved by all and like a psychotic brat. But having owned my dog and my cat I don't believe that conciousness arose out of such gross anatomy. My pets had brains and personalities too; both of them.

Marvin Minsky in "The Society of Mind" posits that consciousness, the being that I call me, comes into existence as a part of a process of communication, as the result of the different parts of the brain communicating the results of their various functions and that conciousness arises out of the need to coordinate their efforts.

Much of this occurs over the nervous pathways, the corpus callosom, the pale gray part of my brain connecting the right and left hemispheres, so its got some thing to do with what Julian Jaynes was referring to. (I recommend hitting a web site for more information, one I've found that's got all kinds of info is )

Dylan William, in a short, 8 page paper called "The half-second delay: what follows?" for Kings College London School of Education says that there is an enormous disparity betwen our sensory data, which he estimates is processed by the unconscious mind at about 11 million bits per second and our conscious mind which he estimates only handles about 50 bits per second.

11,000,000bps versus 50bps is a disparity of several orders of magnitude. His paper is about pedagogy. I'm about neurological disease mechanisms. But I also happen to think that finding effective ways to teach and how we process information at a deep contextual level are related.

Its a question of 'noise' overlaid onto the signal. Where we differ, Mr. William and I, is that I happen to be concerned about noise being overlaid on every step of the process from sensory signal acquisition (the 11 Mbps) all the way to how we treat the meta-data or symbolic information (at 50bps) in our brain.

Actually, the half second delay is responsable for a whole lot of effects , from not going Berserker on my last visit to the post office, to being able to smile and nod sagely when I would rather tell some idiot to go nod off in a swimming pool. Preferably at the bottom.

The disconnect between thinking and acting has spared a lot of people embarassing disembowelments; and me a life behind bars.

(There are other things about MS which mean that we can become aware of the half second pause and use the time it gives us to come up with better alternatives that won't land us in hot water. I've heard that tetra-hydra-canabinol gives some of the same effects, [I should ask Montel Wiliams about it, that is if I can ever get in touch with him. He's not so hot when it comes to answering his emails.])

Lesions, the nasty damage caused by our out-of-whack immune system, are present in our nervous system and in our brain. I have stared at my MRI scans and been both fascinated and repelled at the damage wrought by MS.

Its very strange to look at the cabling in my brain and at the areas that are being stripped of myelin without my conscious knowledge. It should hurt like bloody hell. Instead, everything's quiet. I remember back when I was diagnosed that the doctor at the Ottawa General, an expert in seizures, remarking to a colleague while they were poring over my PET scan results that my "medulla was absolutely fried."

I can't help but wonder if this affecting my personality, my sense of self. I mean it must be.

Its a question of how badly degraded the process of translating those 11Mbps down to the 50bps that my conscious brain actually works with.

Given the amazing circuitry, its powers of self-healing and self-organizing, and the almost unbelievably commonplace complexity of translating the we, the society of mind posited by Marvin Minsky, into the me, the 'I' that controls this slowly failing body (and slowly failing means that I'm getting older and does not necessarily refer to my MS,) I am constantly amazed that this is even possible.

But it must be possible since both my dog and my cat had personality to spare.

Enough blathering on...


Old news about Kaye:

I promised you that I would be speaking with Kaye on the show soon. Well, the interview with Kaye Brewster (A.K.A. Polopop) is happening as I write this. It will be on a topic specific special episode coming up soon (like any day now.)

This next bit is for Josh Jacobson, this will appeal to the horn player in him:

I went to Liberty Hall here in Jersey City and heard some great jazz musicians, the "Spirit of Life Ensemble," and was just blown away. Josh, you would have loved the horn players and the groovy sounds that they played. (I can't believe I just said/wrote down groovy, nobody says groovy anymore, but that's exactly what the sounds were. Hot dance-hall jazz, daddy-o.)

I may have been starting to catch a cold but my ears were definitely working. I was especially impressed by the jazz composition talent of their drummer, Victor Jones.

I'm trying to get permission to play "Pine Brook Paradigm 'Forget About It' " and you'll be hearing it as soon as I get it.

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