Wednesday, April 26, 2006

msb-0017 Start Me Up

I remember the Rolling Stones singing that back in '81.

(Yeah, I'm old. And no, I'm not going to play it because its not podsafe.

While I feel confident that Mick Jagger et alia has better things to do than complain about playing that song on my/our little MSBPodcast, the RIAA, ASCAP/BMI have nothing better to do.

Its their job to sue my butt off if I threaten their 'Intellectual Property.'

Must be a bitch wanting to sue people for thinking of a song though, after they spent all that money trying to achieve that very effect.

Hell, I don't feel safe even mentionning it except as a passing reference to a cultural touchstone.)

Little did I know that four years later, I'd need to heed the word after shooting the herd.

I was having a major friggin' attack.

They'd put me on intravenous ACTH and it was simply dreadful.

I went from sort of recovering to flat on my back and vomiting blood as the cow steroids screwed with my, well, with everything.

I spend a couple of days flat on my back while some student interns poked around and prodded me with sticks until I ended up for a week in Neuro-ICU at the Ottawa General hospital.

After a week of that, discovering what a catather was and how good it feels to get it out, and what moistening your lips with a wet gauze really does for quenching your thirst, not much, I finally got placed in a ward, still flat on my back.

I also remember telling my admiting doctor, a cute read-head who was still working to get her own admission into the exalted world of doctors: "Well. Now we begin to rebuild a man."

I repeated it twice before giving up since she just was not making out what I was saying.

ACTH was so bad that I got real healthy and I stayed real healthy for twelve years.

I didn't want to go through that again.

I produced the Ottawa MS Chapter newsletter for a little while.

But life changed, I discovered Smalltalk and Object-0riented programming and I ended up travelling all over the place both on this continent and in Europe.

Lemme tell you a story about spending the night at Logan airport.

I think I go on and on about building a specialty channel for MS, and I do and its blazingly obvious, and talking about it has become boring, even to me.

But I spent the entire night at Logan at Logan airport watching the billiard balls go through those wire races and I know what being bored really is.

Hour after soul crushing hour without even a security guard around watching those
billiard balls go through those wire races on and on and on and on.

In fact, I'd lost touch with my disease and didn't know that they were no longer carving up cow brains for the ACTH any more.

I was given cortizone for the following attack and I found out that there even disease modifying treatments.

I chose Rebif for no other reason than it offered me the fewest jabs a week for my treatment.

I hate needles. If they ever want to test inhalers so I could breathe in my medecine, I'll sign right up.

My father worked for a pharmaceutical firm, Merk, Sharp and Dohme in Montreal, and I learned to avoid puncturing my skin at all costs.

I'd grown up in the fifties when there was still polio, people still died from eating too many crab apples and they definitely died from infections.

It didn't help the rampant paranoia that my family knew somebody who'd died from slipping on ice and falling on the ashes that were spread to try and prevent slipping. Real effective there no?

She'd died from the infection she's got from making a bad landing on the ashes and ice. She was a young healthy twenty something.

Nowadays, there are several disease modifying agents: Avonex, Betaseron, Copaxone, Novantrone, Rebif and Tysabri and who knows what else is coming out of the lab soon?

What exactly they do, I'm not qualified to tell you.

Ask a doctor. Maybe he could hazard a guess as to the mechanisms. On the one hand, its science and fundamentally knowable and explicable, on the other hand, its voodoo that works.

Basically, I fall back on the old Bob and Doug MacKensey line from SCTV: "How it happened? Like, we don't know, eh? But there it is... The Miracle of Back Bacon."

I've got a question for the people who download me through iTunes:

I'm trying to figure out if people ever go "command i" on an episode?

Maybe its a feature nobody uses much.

I know about it because have to.

After I've written an episode, sometimes weeks in advance like this one, and I've hunted down and downloaded some interesting music off of
  • I use Garage Band to record an episode,
  • mix the music and
  • any other audio features I need to do,
  • then I export to iTunes,
  • in iTunes I convert to MP3,
  • add the art and
  • show notes before
I copy and paste the show notes and get the MP3 uploaded to

You can look for the lyrics tab on iTunes and the show notes on what music I played are there and the websites of the artists.

You can also look for the pictures or images tab and you can see what pictures I downloaded with the episode.

I really should get some of the other podcatchers I see appearing on the list I get on the statistics web page tab, but my Mac is full enough.

I'm working on some news, but this episode was written weeks ago as you hear this, and things have not progressed a lot.

While Lee went to the caregiver's conference and I went to a presentation on acupuncture.

Don't ask, I'm scared of needles, I was squirming in my seat the whole time and it hade nothing to do with MS. It had to do with being scared of puctures. I like my integumen unpunctured, thank ye very much.

But things are happening.

msb-0016 Safety first.

Feedback goes first so:

Thank you Christina. Like you say: "I have MS. It doesn't have me."

I am reading your blog right now. Its a "clock sponge."

I'll take your comment about well written blogs as a high compliment indeed.

Yours' certainly is. "Poésie" is a state of soul. Your writings may not be poetry but they certainly are "de la poésie".

Safe journey.


As I stumble around my condo, I am reminded of "Elmer the Safety Elephant."

Many of the hazards we face are of our own making.

Not finding a way to integrate safety into our decor is our own fault.

I'm not talking about those ugly wall mounted knurled aluminium poles and bars which we can find in almost any hospital toilet, but any kind of architectural element which can serve to steady a person with uncertain gait.

I'm reminded of the chair rails which ran around my old house on Melrose street in Montreal.

They divided the wall horizontally at chair back height and had lots of sections vertically.

I'm remembering them because, while they had been a pain in the butt to wall paper, in between all those vertical risers that weren't the width of the rolls we were hanging and required a lot of careful cutting and trimming, they would have been great to have along the walls of the condo over here.

A smooth, unified drywall has two big disadvantages:
  • One, they're so smooth there is no place to hold onto for support.
  • Two, they get finger and hand prints, so you hate to touch them.
My door jambs require frequent cleaning because unsteadiness is an inevitable effect of MS.

Its hard to remain perfectly vertical.

It takes coordination that we usually lose as the disease progresses, along with our ability to maintain our balance.

Its rarely an inner ear problem. It is instead a matter of coordinating all of our muscles to act in concert to maintain our upright bipedal gait as we try to move ourselves from one spot to another.

We can thank the Bahaus school of design for introducing these, uh, innovations to North America in the 1920s and '30s.

We can further thank the American home builders for seizing on the cost reductions, so quickly that its now rare to find an appartment without such spare decoration.

Bare walls were turned into a selling point; they became a feature instead of a detraction.

They certainly came into vogue after the second world war, when there was such a rush to build up the suburbs, to get everybody driving, and to move everybody out of the 'dirty, grimy cities' and out onto their own ranch-type-style tract houses.

Robert Moses was king. He built the city and the suburbs of New York city, destroying great swathes of it for highways and paving it all as he went.

And his example was followed by Moses' wannnabees in all metroplitan centers across the planet.

Downtown Kansas City, Misouri was practically deserted when I lived there; with skyscrapers built in the thirties standing empty in the center of town. Empty!

When I wanted to go shopping, I had to rent a car and drive miles to the malls.

What's good for GM is good for the country; right?

Never mind that there have been countless plays, movies, songs and psychology books written about how bad an idea it was to rip the trolley tracks, like they literally did in LA, and go quietly nuts in the 'burbs.

Just drop another of mother's little helpers, drive off the the mall in a land boat and consume your way to happiness.

Now that oil is hovering around the seventy dollar a barrel mark since we're having to compete with the rest of the world for every drop; every car is too big, too gas guzzling; every commute is too far, too long.

And every innovation in communication technology is making such senseless, restless motion all the more unnecessary.

We're now faced with having to abandon the suburbs; because we've gotten older, or maybe just wiser, and the effort of maintaining the suburban lifestyle, with its alienation, its loneliness and its remoteness, just isn't worth the commute.

I love living cheek by jowl with Manhattan, New York City.

Around Journal Square or downtown in Jersey City are nice places to live, work and play. Its only improving as people rediscover it.

By the time the new World Trade Center tower is standing, it should be great.


I've got to come up with a closer, a way to separate the content from the ads that will follow the show (I told you some thing was happening ... and I'm working out something with the National MS Society to put "pro-bono" ads their national events and updates at the end of these shows.

I've got to do some smooth talking to figure out a way to run regional ads in a way that doesn't break the non-existent budget.)

Friday, April 21, 2006

msb-0015 The Domino effect

Tiling things, butting things side by side, edge to edge on some surface, is the principle behind mosaics. Don't worry, I won't go into the four color map theorem, tesseracts, R. Buckminster Fuller's dymaxion spheres or any obscure topological stuff. I just wanna discuss the principle of juxtraposition.

Tiling things of different size, different colors, different shapes is how the Etruscans, Romans and Greeks adorned some of their buidings.

The beauty of Roman baths still has the power to dazzle, even a thousand years after the last Roman bather dipped a toe in.

Canada has always been considered to be a cultural mosaic.

Its never been a melting pot, where individuality is burned away, melted in the crucible of intolerance for difference into a slag of commonality.

Okay, that might be construed as a slur on my current home and chosen place of residence, so before you show up with pitch-forks, tar and feathers, lets me say it isn't.

It is instead a cautionary tale on the effects of mass media.

Broadcasting a single message with a single voice is how mass media works.

One voice with one message is what Lenie Reifenstal used to sell the Nazis to the world.

One voice with one message is how most dictatorships keep control; they speak with the one voice, which has the effect of stifling the dissenting voices.

A dictator's power structure is also faced with the silencing of all other voices, but that is usually acceptable colateral damage to a dictator.

We MSers are faced with the same de facto situation, but in economic terms.

There are now a thousand TV channels on cable with a focus on slightly different demographic, psychographic, geographic and/or behavioral appeal, but they are still lined up to extract the most money from the most people.

That means we're still left out.

All the MSers on the planet, the two hundred and fifty thousand of us is the 'States, or even the two and a half million of us world-wide, don't add up to the potential audience of a local cable channel in New York City or Los Angeles or Dallas/Fort Worth.

Okay, the potential audience might be more when heath care providers and health care workers are taken into consideration, but it still doesn't add up to as many people as might catch a used car ad on whatever TV channel you choose.

Never mind that the audience is not in the market for a used car at that very moment. They might be at some point and they'll at least know the name of the dealership. Advertising is an entire industry built on that hope.

The medium of podcasting is self-focusing.

Nobody is likely to come here for the content unless they have an interest in MS.

Now, nobody is going to spend their money in trying to reach 0.0833% of the population when 99.9166% of the population is making so much noise that we can't even hear ourselves think.

But podcasting cuts through the noise.

It is a self-selecting communication channel where people who need to subscribe to get the information they need.

Podcasting is just what the, uh, doctor ordered.

You can catch the used car ad on any chanel, so I don't want their sh-, uh, stuff. I want MS products and services.

Since I use intend to use Kiptronics for delivery of the ads, they can be localized for a specific market. They can be tracked down to a specific IP range and/or area code so the Texas-only ads don't run in California or vice versa.

This podcast is my attempt to become the man in the middle.

The person who will listen to you, my audience, and will 'cast to you what products and services are available to you.

The cost reversals of the current economic situation and the cost savings of podcasting are like forces of nature, 130 to 1 and the proposed postal rate increace only makes it more so.

And when this takes off, and it will, I hope to repeat my success in setting up this podcast by helping other organizations creating their own podcasts, perhaps establishing an umbrella group to help us achieve some economies of scale and finally getting channels of communications open where we have had none before.

And I hope that I'm playing some tunes that you like.

And if you don't like 'em or if you have any requests, email me or Skype me. The links are right on the web page of . Feedback. Yea...

msb-0014 Illness as something other than a metaphor

Feed back goes first so here it is.

Juliana is was lovely to read your email.

You are indeed getting the whole point of putting out these podcasts. We are finding a voice and no longer have to care about being ignored by broadcasters and the mass media.

MSBPodcast is one of many, oh alright, of a few podcasts out there, but it is the first of those to bring the tools of the media to the people who up 'till now weren't able to find a voice amid the clamour.

I have no competition. I have collaborators. There is plenty on room. In fact there is all of cyber-space.

I am glad that Todd Maffin and his wife Kim are doing their podcast: . I listen to him and his wife and I hope he is listening to mine. I'm trying a different tack to accomplish the same goal. We are bringing our voices to MS. There is no such thing as being too loud in this "Storm Force Gale" of competing media forces.


The font contest is now re-opened. I've decided that while the Canadian MS society is locked into the logo type, they now only have an outline of the M and the S to work with, we shouldn't be limited like that. I'll still give $50 at the iTunes Music Store to anyone who can create or adapt a font for use on this site and for this podcast.


On Friday, I sort of re-discovered Tai-Chi but this time with this handicapped teacher. I don't have his entire story, yet...

He has agreed to be interviewed on my podcast so that will be coming out as a special edition.

While I have neurological scarring, he has physical scarring. But, seing that I am moving so much better and faster after one session, a new plateau for me, I am sure that it is actually shrinking my "somatic cage" closer to my own physical boundaries.



I reached a thousand downloads on Sunday April 30'th 2006. Average audience of 55 with over 175 once on show #7.

No they're not all at once, but it is a now over thousand downloads.

To celebrate, you're getting a change of format. I'm coming out today and Friday, as you can tell by the escape, uh, release of this episode on Monday evening.


And Lee had a great idea.

I could tailor a show around one person, their taste in music and their personalities.

Like my friend Eugene says: "Sounds like a plan, man". (He's a great Solaris SysAdmin. He's taking care of my Linux box, and he a really good friend.)

If you'd like to hear a podsafe version of you on the show, drop me an email or Skype me. (I received a call from Poland earlier. This stuff works!)

Email and Skype are on the left-hand side of the page.


Now on with the 'cast:

I want to open with an apology to Susan Sontag for my choice of title for this episode.


I read, understood and loved her book "Illness as a Metaphor" back in 1979. Actually, I'd recommend it to anybody who's going through any kind of major medical caca. With her it was cancer. She's since revised and updated in to include the reaction to AIDS.

It can infact apply to being cast as a medical pariah due to any condition.


I'd been reading a tome on "Economic Geography" for school.

Apart from the fact that it seems to be written by Post-Modern Phemenologists, (the kind who make arguments like: "I am a poet therefore everything that I write must be poetry" and proceed to scribble something on scraps torn off of old grocery bags things that look more like laundry lists,) there is no mention of made throughout the entire book of what happens if they, or anyone else, ever gets sick.

This is something that I and I suspect all of my audience are intimately familiar with.

As are all actuaries and insurance companies.

Yes, we got in front of whatever bus it was that hit us, and are now lying in the middle of the road, obstructing globalized and regional economic traffic.

But what role do we, a small but growing percentage of the aging world population, play in the economic realities of the world.

We are the reason health-care costs are escalating.

If it wasn't for us, there would be no need for health-care.

And screw geography, the health care costs are escalating everywhere for everybody.

Multiple sclerosis may be more prevalent in the northern hemisphere (in northern Europe, continental North America, and Australasia, it is estimated that about one of every 1000 citizens suffers from multiple sclerosis, or about 2.5 million people are afflicted) but Dengue Fever is almost unheard of up here in the north. (There being around 40 million cases of dengue fever and several hundred thousand cases of dengue hemorhagic fever each year.) (I'm quoting wikipedia epidimiology stats for these figures.)

Dengue Fever is in fact a bigger problem for humanity than MS is, world wide, but they're even poorer than we are and we all know what makes media run don't we? Money.

The fact remains that, between MS, MD, ALS, CF, DF and the rest of the aplhabet soup of human frailties, a statisticaly significant portion of the human race is, at one time or another, sick with and/or slowly dying from something or other.

Up to now, we all have been quiet compared with the general clamour.

A great deal of the silence was because we could not compete with the loud voices of all the people screaming for cheaper gas or cheaper government or cheaper S.U.V.s and all of the other people screaming for them to buy their new and improved Turnip Twaddlers.

And the people who are paying the price for that silence is us.

Well, I might suggest that we speak up more effectively and efficiently; and with a single loud voice.

This podcast, amongst others, and the internet's capacity to unite us with shiny glass fibers, are parts of the megaphone we have to use.

If would be more efficient, read lower in cost, to use the internet to cut through the noise.

When I'm ailing I do not want to have to hear all about what Madge/Madonna, Hale Berry, J.Lo. or some other vapid, vacuous and vain celebrity is barely wearing this season.

And the religiosos with their Bible or Torah or Q'ran or Veda don't even enter into this discussion.

When I'm ailing, I want information from the people who can do something about my condition. I want to read about and hear from people who are competing to get treatments to me.

(Whaddda ya kno'? I am a capitalist after all.

I dont know whether to cheer or to lament that.

Sickness and health are not market conditions.

They don't conform to the general 'shape' of market economics.

I don't know what could/should be done about fitting in the warm and fuzzies of a socialist perspective with the cold hard facts of market economics...

(Actually, that is part of the malaise afflicting France. The populace are leaning left against the marketeers who are leaning right.)

I'm thinking that it might make more sense to reserve a portion of the global GDP in proportion to the ratio of sick to healthy people, and to hold it to pay for medical expenses.

Then the health sector can apply market forces for their portion of the total pie.

I mean there must be some way of injecting a bit of reality into capitalism.

Even arch capitalists get sick.

Otherwise I'm dead to the wider world in all but body and spirit and I have more to contribute.

That would be so inefficient, and I hate inefficiency.)

Off my soap box and back to the topic:

I can't hear my news because the brodcasters are busy trying to extract the most money from the greatest number of people.

That means air time goes to whom ever can afford to pay the most bucks per second.

They are exploiting a mode of making money that is only slightly over a hundred years old and it is based on the economics of scarcity; who really owns access to the air waves?

And if that leaves me and my view of news off the air, I should drop dead?

"No I don't want to buy a friggin' Turnip Twaddler. I don't care if its supposed to be new and improved... Piss off."

Pharma. Co.s, health-care providers and service workers can all benefit from the same low cost megaphone that I am using, if we work together.

Not cooperating mind, get real, but a friendly competition on a level, open and uncrowded playing field.

What I am proposing is a new way to use media, by avoiding it all together. Podcasting is a better choice than the current silence enforced by the turnip twaddler pushers.


I have attended a few simposia, a few conferences and I'm no dummy and I've learned a lot but they have articles and presentations with titles that sound like they're way over my poor head.

Its not a question of dumbing stuff down, and I hate it when people talk down to me, but its a matter of finding a way through the jargon laden verbiage.

I hope Lee's not going to bee too mystified at the next caregiver's event. (May 7th, 2006 in New York City.) Knowing her, she won't let herself be too intimidated. She's going there to do something she's really good at, network with people. She really much better at doing that than I am.

Maybe I can persuade her to speak into the mike as she tell me about it. :-)

That's what I hope this podcast brings to my audience. That's what Todd Maffin and his wife Kim bring to me with their

I don't have to talk down to anyone but, really, I avoid sesquipedalian words, with mixed Greek and Latin roots. (Just like I won't eat food containing ingredients that I can't pronounce.)

If not, if I'm as guilty of bullshitting as the rest of these people, email me off of the web page at and tell me that I'm full of crap.

Lets see if we can all find a way to use these podcasts.

I know what I want from it.

Now, you people can get some feed back to me, so you can be counted and heard too.

And the pharmas and health service cos. can get on board too. We'll be talking to them and hearing from them too. (And since they stand to make some money from us, they should pay to run their ads. Its a lot cheaper than mailing the packages to me and it might save them some money in the short as well as the long run.)

Get strong Juliana.

TTFN. (Ta Ta For Now)

Thursday, April 20, 2006

msb-0013 Tragically Hip. That's me.

Well, as you can tell by the "smooth as silk" intro, GrooveIT by Denis Kitchen off of the Podsafe Music Network, people are starting to get back to me about this MS 'specialty' podcasting (and my mesage hasn't even appeared in New Jersey's MS Connections yet. :-)

It makes perfect sense that the pharma co.s would get back to me, since it so much cheaper to advertise on this tightly focused podcast than trying to use the mail, at great expense, to send stuff to one person at one time, and to send stuff only once.

Podcasts are great because they cost so littler; like 160 times less.

And that's just the beginning.

Lets talk reality now.

A pharma co can develop the greatest cure for MS in the world, but if nobody with MS ever hears about it, they have wasted all their time, money, blood, sweat and tears. (Though I suspect the blood was provided by the Guiney-pi, pi, pi..., MSers during the drug trials.)

People only hear about any product once when they have a diagnosed exacerbation. Sadly, if you've just been diagnosed with MS, you're not into making any decisions, for any reason.

The people who need to make those decisions are the same people who are in moderate to heavy denial about their diagnosis.

Its not fun to be diagnosed with MS and it really isn't fun getting sick enough to require the diagnosis.

They pretend that its not happening or that its all going to go away, like a bad dream or a nightmare. They'll wake up real soon now and it'll all be over.

They are not going to be in the most receptive frame of mind.

I know a few people with MS and its rare to be clear-headed about this, or any other, life-altering disease.

Lke it not, MS is a life-altering disease.

It has put me throught many changes I would have rather have done without, and those have happened mainly since 1996.

Before then, I could pretend that I was strong and fit. (I just couldn't write worth a crap, but I could type like a demon. Good thing I was a programmer and have since gone on to project management.)

Since then, the effects of the disease won't be denied, though I still do it. (And I blame my unnaturally sunny disposition on MS [How's that for irony.])

Back to the topic:

Why do we want this, uh, news from the pharma pulpit?

Hey, we were just walking on the sidewalk when we got run over by a bus called MS.

I want to hear about any damn thing that will stop or better yet reverse the damage and get me walking normally again. I'm not even asking to play guitar or to dance again, though that would be luverly.

I'm asking for the same kind of news from rehab clinics, most of whom don't know about MS and keep trying stuff for people who'd been hit by real busses but only their meat got mashed instead of their nerves.

My healing is drastically different from the average patient they see and my limits are drastically different from the average patient they see.

MS has taken wire strippers to my nervous system.

The rest of me is healthy as a friggin' horse.

I'm muscular, fit, a slender 170, to the point where I have trouble finding fat spots to inject myself with Rebif.

Its not that I didn't want to show improvement or that I'm in any way weak muscularly, its that MS has taken wire strippers to my nervous system.

I no longer have any fine motor control. I can no longer make grand sweeping gestures (Not without knocking something over anyway. :-)

Man, I'm all over the map today. Back to the topic:

And what do we want to tell them about their injectables? (Like: Can't you come up with a inhaler like the asthma medecines use and stop making me squirm just thinking about taking my meds. Besides, injections are ways for getting hepatitis A, B and C. )

Well, you can't make any kind of progress if you can't get any fedback about why people aren't taking your pharmaceutical products or following your rehab regimen, (and people who aren't taking your product, or following your rehab regimen aren't going to bother telling you about why they aren't taking your product.

That is why I have an anonymous survey form you could/should/would be filling out on the page.

The questionaire processing and statistics gathering are actually quite quite scientific. I took statistics in school and I can report that it really going to provide them with statistically significant data, and that I can (and will) tailor the questionaires to fill in any statistical points that are required.

Of course, its still anonymous and its still optional.

And I can get feedback of all kinds through email ( ) or through skype ( skype:MSBPodcast?call )

Well, at last "School's out" ... And that would be just a perfect song for the occasion. Hmmm. Maybe I'll bug Vincent Furnier (aka Alice Cooper) for permission to revive that song next. Nah, let him enjoy his golf game in peace.

MCNY is trying but they also just don't get what its like being a disabled older student.

And I'm not going to be the one to teach them.

Their rules, procedures and bureaucracy (read trite tripe and BS) just aren't worth fighting with them about or putting up with at any age, never mind at my age.

I don't have the energy, the time or the inclination to drag their part of the American educational system out of the late Eighteenth Century. Before there even were typewriters.

They can take their Bachelor's degree, make a pointy little dunce cap out of it, pluck a quill off a duck's ass and stick it.

I don't need the piece of paper and I have many more important things to devote my time, energy, remaining strength and the rest of my life to; like this podcast.

So I'm taking the Associate's degree in Business, walking out and never going back.

School's really out for me.

Saturday, April 15, 2006

msb-0012 It's finals and I don't have time to talk a lot.

Its finals at MCNY this week and I don't have time to talk a lot.

Bet you're all relieved to hear that.

This week, unless people get back to me with emails, and I really not counting on that, this show is going to be about one book review, "Begging Mercy, Offering Grace" by Rachel Knight, and some podsafe tunes that I want to share with you.

I'm still waiting to complete the interview with Kay Brewster.

The interview with Amanda Manaco is tentatively scheduled for some time in May, 2006.

I'll be going to "Podcasters Without Borders" in June, 2006 in Kingston, Ontario Canada and I'll be trying to interview C C Chapman then and there.

Not onto "Begging Mercy, Offering Grace" by Rachel Knight.

This is not my usual read. I mostly read technical manuals, science books, software books and other non-fiction books.

Well, I also read Terry Pratchetts and news papers.

But my reading is definitely not of a fantasy and romance genre.

Thus I was pleasantly surprised at my reactions to this book.

It was engagingly written and an addictive read. I found myself caring about Jenny/Jehane, Alex, their parents, brother, friends and other close relationships.

This book was well witten, with care and attention. I do not know how many revisions it went through or how long this book took to write but it was definitely worth it.

This book brought me hours and hours of enjoyment.

I started off slow because the subject, an unashamed romance novel, is definitely not my usual read but it took very little perseverance on my part before I found myself mesmerised by the characters. They are extremely well fleshed out and well motivated. I could understand and relate to them.

Also, I have noticed that I suffer from a spelling hiccup. Any mis-spelling in a book tends to halt me in my tracks and destroy the flow of the words as they flow from the page to my brain.

But this time, I couldn't even tell you if any words were misspelt because the book was so well crafted that either, the book is perfect, something which is becoming all too rare, even in the major presses, or the characters were just that engaging, even after the demands of my life demanded many interruptions.

I can definitely recommend this book to anyone, even a nerd like me. It will always stay as a guilty pleasure: I enjoyed a romance novel. (And I'm looking forward to her next one.)

Rachel Knight, Beggin Mercy, Offering Grace.
ISBN 1-4116-5323-8.
ID:168029 at

This week as a special treat, its The Tragically Hip ( ) as a closer. They got back to me with an email in record time. They are familiar with MS because the webmeister's best friend has developped it. That really sucks. (And to their friend I say: If you wanna talk about it, or just need an ear to listen to what's been happening to you, I'm reachable on my web page dude.)

They are in my humble opinion THE BEST Canadian band ever. They're playing "Blow At High Dough".

Now, if you've been following this podcast at all, you know that I'm Canadian, that I love "Three Dead Trolls in a Baggie," but you've never been exposed to my absolute adoration for "The Tragically Hip".

The are an unbelievably good band and have had Canada in their thrall for simply for fuckin' ever. Why? ... What are you? Hearin' impared? If you are, check out the lyrics... Its absolute poetry set to kick-ass music. Go to their site, ( ), order their CDs, 'cause I haven't begun to describe how damn good they are. They are full of goodie good goodness.

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 Québecois 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.