msb-0087 MS Expressions and Expressions of MS

msb-0087 MS Expressions and Expressions of MS...

Feedback comes first so...

I ran into "Mother Cooper" at a Rotary Club meeting today (November 30, 2006).

I'd attended a church art show back on September 15th, 2006, (which I covered in "msb-0069 Bier, bier, Ich liebe mein bier",) and she gave my card to someone in Jersey city who's been recently diagnosed with MS.

This lady, being Spanish and relatively poor, (like who can actually freakin' live off of a disability pension,) she could very well make use of something I'm going to cover later on.

As to other feedback, it either doesn't concern the people in this blog/podcast, its a personal and confidential nature, or it a whole lot of pump-n-dump stock spam.

(F*ck these guys annoy my ass off. I'd favor the death penalty for these ass-hats!
They're scum and I spit on every one that makes it through my ever evolving Spam filters.
Like I'm gonna buy stocks from somebody who's name doesn't match the actual sender name and who's address doesn't resolve properly. Puh-leze.)

Dang I wish people would look a my site and PayPal me some money, buy some stuff off of CafePress or fill in my audience survey. I'm pretty much resolved to the fact that MSers are a quiet bunch (except for you MDMHvonPA and you Miss Chris. :-)

Money speaks volumes and since I'm still the only one who's paying all the bill around here, I'm going to play what I think deserves a listen.

So to punish you, or to praise you, I'm going to play some songs that I've played by the X-Ray Dogs as well as burn your butts with a few new ones. (I really, really like them. :-)

----

I love palindromes. It goes back to when I was first learning English as my second language.

I loved with how you could play with the written form of the language and with how plastic and deformable the vowel sounds were.

Lets tackle the first part of the palindrome:

One of the problems with putting things on the internet is that they are immediately global.

There is a new site called MS Expressions which is a production of the MS Comprehensive Care Center of the New York University Hospital for Joint Diseases (at 301 East 17th Street, New York, NY 10003 [telephone: (212) 598-6305 ])

While I intend to involve myself with it, possibly with podcasting their missives and possibly with commercial advertising for MSBPodcast.com, it should be immediately apparent to anyone familiar with the internet that it calling the site http://www.msexpressions.org/ immediately places it in the international sphere.

So be it. It might be a New York University web site but its reach is beyond whatever boundaries are artificially imposed by borders. This will definitely cause some friction and redefinition of the scope and mission of the web site.

I am asking that all bloggers of which I am aware, regardless of where they are, and all members of my audience, on both sides of the Atlantic, to help me test out the site and make it the best it can be.

Just keep it under your hat, MS Expressions is not for general consumption, and don't expect everything to be perfect because you are, in effect, beta testing the site before it goes public.

----

I know that MSers are definitely not short of coping skills, good cheer (in spite of every thing we put up with,) and talents.

Man! We are a skilled bunch of disparate individuals.

This disease is an equal opportunity pain in the ass.

Doesn't matter what sex you are, what color your skin, what language you speak or what religion you believe in, or not. If you've got a nervous system and an immune system, your myelin is up for grabs.

----

Now lets tackle the second part of the palindrome.

That's gets us into several levels.

I don't want to speak at the physiological level.

I'm frankly not qualified to even entertain the thought. And, like Clint Eastwood said as Dirty Harry "A man's gotta know his own limitations".

I don't know which is more depressing; that I'm old enough to remember him saying that line (heck I was already married to my first wife then,) or that some of you blogging about having MS weren't even born yet.

Which does get us to segue into, by a round about way, the level I do want to speak to you about: the pedagogical level.

Before you ask, you're not being tasked to learn anything. There will not be a test, written or oral, after this episode of the podcast.

Today, November 30, 2006 the New York Times ran an article entitled "For $150, Third-World Laptop Stirs a Big Debate" ( http://www.nytimes.com/2006/11/30/technology/30laptop.html)

I found it a very tight read and, since its about hi-tech, which I love, and its about kids, which shall forever remain a total mystery to me, I found it very entertaining.

But who do you think is worse off?

Someone who has been stricken by poverty and ignorance? (Both of which are vincible, not easily but it can and does happen.)

Or someone who has been stricken by MS? (Which is an equal opportunity disease, entirely unpreventable and potentially tragic.)

Now combine the two and it is tragic. Not only have you got someone who is blocked from upward mobility by economic impairment but also by physiological impairment.

(Its like the sign on the sides of the seats on the PATH trains "Please, wont you give this seat to the elderly or disabled."

Maybe but I guess if and the feel free to let me stand since I'm "elderly and disabled".

Who knew so many people were logicians and understand it as an exclusive or operation.

These people really chap my ass. <sigh≷)

----

I happen to come from the early adopters, the folks on he bleeding edge of technology.

I'm sitting here at my desk, surrounded by multiple thousands of dollars worth of high-tech geeky goodness;

computers, laser and color printers, flat panel display, pre-amps, audio recorders, mixers, microphones, and some advanced audio and computing paraphernalia;

all of it connected through high speed communications to a world of other machines, which are augmenting the corporate and the corporeal, (if you're reading or listening to this you know who you are and how shitty, or not, you felt this morning.)

The situation is just swell for me. I'm the first to admit that and that my life could have turned out much, much suckier. (Of course, I could never have contracted this disease, still have been a total ass hole and have had a car crash of a life. But I did and yet I didn't!)

My life has some technology in it. Okay its got a lot of technology in it. With this technology I am able to communicate with anybody who's connected.

My disabilities become my personal inconveniences. Its because I can augment myself, through the use of computing devices and the internet.

But what if you aren't connected? What if you are isolated and unable to do anything about it?

Well, its time to address the suckiness.

Its time to make sure that when people leave a hospital with any devastating diagnosis, such as MS, that they are able to function in some fashion after they leave.

They don't all have to be at my level but they have to be able to connect.

Well guess what?

The perfect $150.00 "consolation prize" is at hand.

Now MS and other devastating illness sufferers don't have to face their fate alone, hanging on in quiet desperation.

It can be part of of the requirements of their rehabilitation before being sent home from getting their dread diagnosis, that they be provided with the means, if they don't already have it, to connect, a simple online address, and the training to use it as part of communicating with the medical facility.

----

I can even give them the name of somebody who could use it; well actually a couple of people.

One of our neighbors is a woman retired on a health disability who spends her days at a public library to get on line and you can't really print out stuff at the library. But because she's on a fixed income, she can't afford a decent computer or a decent connection.

HELL-LO!!!

These $150 machines should be available to both of these people, and if we extend the classification, to all people in the same information starvation straights as them.

Bureaucrats are so inefficient.

msb-0085 Vodcasting for & by kids makes the news.

msb-0085 Vodcasting for & by kids makes the news.


"Fourth grade students in Mrs. Zerafa’s class have been communicating via email with “e-pals” from Willington, England. Ms. O’Brien, technology specialist, established this activity in November with the children writing letters to one another. The third and fourth graders from England then sent pictures of points of interest in their community.

Washington Irving’s fourth grade students took a walking tour of Tarrytown and Sleepy Hollow and photographed historic landmarks and places of interest. In the computer lab, the children researched and recorded the information to be “pod casted” to our friends across the pond. We hope they (and you) will enjoy our final product."

(from: http://blog.tufsdbuilds.org/ )

Well, its official; podcasting is moving into the mainstream.

First came the developers and early adopters; they were the "firsters", the guys, and gals, who were just playing with stuff because it was new, (had to be, they were making it,) and new is cool.

Next came technophiles; guys and girls who were seeing the bleeding edge of something empowering. People like Kim and Todd Maffin, (who ran the multiple sclerosis podcast but who haven't put out an new episode since July of this year so it seem they have podfaded, [hey, life is like that, you get busy with other things,]) and people like myself, who see something that can reach beyond the tickle that makes it through the traditional mechanisms of our concepts of media.

Now there's school kids who are using the tools as toys that help them rise to a whole new level of communicating through the net.

Pretty much, the entire thing depends right now on amateur effort (the term "amateur effort" is not a pejorative, its a term for people who really care about using this technology for everything and anything that it can do. They truly love it.)

----

But there are the beginnings of a podcasting profession, of podcasting as a media job option.

I recently applied for just such a position for CBS/GE. Being a bleeding edge adopter, a technophile and understanding the future of the media business out there, I'd normally stand a chance.

I know that I'm not going to get it, but its out there.

Really, given a choice between someone who has MS and knows it and anybody else of unknown illness potential, who would you choose?

More to the point, what would you say to your shareholders when asked: "Couldn't you find somebody healthy?" The sad part is that they're really asking: "Couldn't you find somebody who you don't know is sick?".

At the same time, its an opportunity for advertisers of MS specific products to reach their constituency, us, the MSers who could use their products. (And I have a model of advertising so that they can reach us when we want to be reached instead of us being annoyed by ads.)

Under the current broadcasting, clock synchronized system, neither they nor we get a break. But the use of the internet means the end of the "tyranny by demography".

----

As if you needed further proof, The New York Times this Saturday, November 26th, 2006, is running an article ( http://www.nytimes.com/2006/11/26/business/yourmoney/26frenzy.html?ref=technology ) called "Media Frenzy: Seeking Executive to Tame the Digital Future"

I just checked my stats and I'm up over 4000 downloads. Hoo-friggin'-ray!

I have just sent an email offering my story and my podcasting services to the MS Expression website that the MS Center at New York University is starting up.

I get a feeling that things are beginning to look up. :-)

----

I'm keeping it short today because I got some good news.

I have to go to MCNY and pick up my diploma. I'll have to make some photocopies and scans of my "sheepskin" and send them to everybody who supported me in my many little battles with the education system.

msb-0084 MDMHvonPAs' Roundup-06.11.22

Here is MDMHvonPA's eagerly awaited Roundup-06.11.22:

"What to say, what to say?

Recently, I've been running into some commentary regarding the fiction of free will. One author postulated that we are merely a gaggle of fleshy robots grinding our way through existence though the whim of our programming. We only do things that our brain has been set up to allow us to do. If we are genetically predisposed to be an alcoholic, a pedophile, be overweight, a gambling addict and so forth, then it will be so.

What this nihilistic philosopher of the electron bully pulpit has forgotten is that we have the free will to choose NOT to do these things. If you like to eat (like me) and you see that cake, you know it will be particularly delicious. Sure, you can shove the whole thing down your maw but you'll know there are CONSEQUENCES for that hedonistic engagement.

Likewise, if you are genetically marked to get MS, what happens after that (if you should be diagnosed) is really up to you. You can lie down and die or you can take charge and move on. I get really wound up whenever some bit-rate blow-hard jumps on the kitsch pop culture bandwagon and blathers that we are just mindless robots moving through a time-line.

No, I have will, I have choice and I have a goal. To fail so absurdly to adhere to critical thinking is a crime ... a capital crime, against the higher mind. So let these myopic twiddle-bots spout their slander against humanity, I have not the inclination nor the self-doubt to sop up their vitriolic spew.

With that, I will engage in some free will and selfless acts that are NOT within my programming. Charles was the recipient of a cry for help and I feel compelled to pass it along.

Marlene Askew asks for assistance in finding 2 escapees from NO-Katrina. Last seen in flight from I-610, in the Gentilly section of the city. No names, just a young Man and his MS wife. I'm pretty sure it is not Friday's Child (who has just moved back into their home ... cheers!), but if you are out there, just send a note to Charles to let him inform Mrs Askew that all is right in the world. In this age of stolen identity and medical data clearance ... bloggers have become the Ham Radio Operators for finding lost souls.

Sancho Knotwise (jm) has found that MS is full of little nasties. One of the less damaging, but entirely annoying symptoms has been his unwanted companion of late. A pestiferous nagging companion at that. As a fellow sufferer of facial tics, I really can identify with his annoyance. Especially with it is one of those sensitive muscles about the eyes. That kind of thing is only interesting when the Tough Cop Movie Anti-Hero has an uncontrollable facial tic, not when you are trying to read a book.

Speaking of small annoyances, Mouse (no, she is not a small annoyance ... SHEESH!) has been spending some time with a new hobby. Squirrel Spotting. Now, the abundant population of these buggers on the Haupertonian Grounds tends to result in an aggressive Mutual of Omaha Wild Kingdom Live Trapping and Relocation program, but when they are not chewing up the bird feeders or digging up the flower bulbs they can be quite a treat to watch. See what she has to note about her crafty clutch of furry neighbors.

Of course, Miss Suzy has her own issues with the varmint population near her homestead. Like that strange cousin from out of state or the Creepy Uncle who likes to use the bathroom without closing the door, the uninvited and unwanted guests are stating to show up for thanksgiving. Of course, even the most egregiously uncouth relative does not leave dropping in the cereal or chew holes in your pantry provisions. Like white blood cells chewing at your myelin, they (the rodents) tend to spoil everything. Of course, this is has more to do with the pockets of little boys than anything. Give it a read, I had a pretty good laugh.

Back to Free Will. I seem to write much too often about Miss Chris. The Ever Patient Mrs is starting to get jealous! Of course, the affection is a mere interest regarding children and karate. Recently, the Scion of Chris has been dealt an administrative defeat in a martial arts tournament and the nature of fairness in the world is a hot topic in her comments. In an academic sense, it has analogies to MS that can be quite obvious and not very pretty. Life can be quite unfair given the nature of man. But much like our attitudes regarding MS, it is how we handle our defeats that defines us as successes of failures.

Thank you MDMHvonPA for your roundup of what's been happening in the blog-o-sphere.

Have a happy "Thanks Giving" because, in spite of it all, we have much to be thankful for, its just that some have more than others. (Hey, we could be "Iraqis". Now that would suck!)

msb-0083 X-Ray

msb-0083 X-Ray

Feedback comes first so ...

There isn't any. There hasn't even been time.

Its no use. I'm not podfading, I'm bursting at the seams. I just got to put this out now and screw this once a week format.

This episode I am torn between playing all of the X-Ray Dogs (at http://www.x-raydogs.com/ ) or just playing you some teasers.

I think I'm going to do what I should usually do when I'm faced with this situation.

I'm going to S.T.F.U. and just let them play.

To paraphrase Mark Anthony in Shakespeare's Julius Caesar: "Cry Havoc and Let Loose The X-Ray Dogs of War!"

---- Alta Plaza

They seem to be based out of London England and I "love" them. The musical influences that I pick up on from listening to them are all over the map.

I'm fact I'm going to ask jm (a.k.a. John-Mark Cullen,) who's in Liverpool, (entirely on the wrong side of England, [but at least he's on the isle, so he's much closer than I am,) who's a fellow MSer to see if he can find out more about them than I can from their website and the very few other sources on the web. Maybe the Brit issue of N.M.E. has something on them. I certainly hope so.

---- Slaughterhouse Blues

And don't waste your time with the American X-Ray Dogs. ( http://www.x-raydogmusic.com/ ) That's a musical outfit that's based out of L.A. that does music for movies, television and commercials.

They're slick professionals and grind out a good, creditable tune but they're craftsmen, hit-makers, people who research their music with focus groups and the antithesis of spontaneous.

They're manipulating their audience, not tantalizing them. The music is engineered, not composed. And its eminently forgettable.

They'll give you exactly what you expect from a music score for your movie, TV show or commercial. But that's rarely music. People rarely walk out of a movie theatre or sit in front of the TV humming along to a shows' music.

Guess what I want? ... Exactly the opposite...

I want something that sticks to my ears and tells me things, maybe even things I'd rather not know. That's why music is caught between the old & familiar and the new & strange. Music can either be baying at the moon or accompanying vespers. There is something about a bunch of notes that affects us. And eventually, we get it and it stops being necessary for this generation to get it... Next...

---- Dead not Quick

I know that all of the music off of the album Alta Plaza album is available for free at soundclick ( http://www.soundclick.com/bands/pagemusic.cfm?bandID=495074 ) I'd have paid them for this musical gift. (Guess what's coming through my earphones as I write this at 01:00? ... Right! I haven't been able to get away from them since last week when I was putting the music together for "msb-0082 Echoes".)

---- Supershine (Live in Las Vegas)

Until next time.

msb-0082 Echoes

msb-0082 Echoes

Feedback comes first so ...

Before somebody asks me what happened to msb-0081, it was MDMHvonPAs column. Since its his content, I didn't feel it was right for me to stake any clam to it by hosting the text on this blog.

Someone is on a serious quest:

"I am writing for advice. Over the past year, I have been searching for someone with MS and, understandably, privacy issues have prevented help from official MS organizations.

On the Thursday after Katrina, I was rescued from the bus depot in downtown New Orleans. I should say outside the depot, since we were ordered out of the building by a national guardsman.

There was a young couple in the group, Al and his wife. I cannot remember her name. They were airlifted; she was completely non ambulatory, unable to sit up.

I had met them on the I-610, in the Gentilly section of the city. Al had arrived asking for someone to help carry his wife to the high area of the interstate. They had been trapped in their sweltering attic, as we had been.

If you saw any of the images from that time, you can imagine her immense suffering. It was an experience of terrible extremes and fears. I think about them constantly. If there were someone who could just send them my contact information, I would be very grateful.

Marlene Askew"

My reply:

"Hello Ms. Askew

you needn't worry. Your email address will not be published unless you want it to be. And maybe not even then.

I think you might want to ask someone who is closer and might stand a chance of having met them.

[... contact info removed ...]

As for the MS Society's privacy issues...

I find it quite difficult to believe that their privacy issues would prevent them from acting as intermediaries since they would be in complete control of all information and communications between the couple and the wider world.

However, I find it quite easy to believe that they would not want to expend their resources to do so since, even after more than a year, the situation in New Orleans is still dire.

Look on the bright side, since they were airlifted, you can be sure that they were alive.

And where there is life, there's hope.

I will be leaving your message posting on my blog and podcasting it.

Maybe somebody out there can help...

-Charles-A."

----

Well, whenever I think I'm, just wanking off, I look an my stats and I discover something new.

I have just hit over 4,000 downloads by some measure and almost 5,000 by some other. Thank you. Your repeated downloads are my inspiration and my vindication.

----

Thursday 16th of November 2006 is a day that marks a significant turn in media.

ClearChannel has agreed to be bought out, which marks an about face in the media conglomeration that we have been been witnessing for the past while. (Why so soon after the loss by the Republicans, I wonder?)

Poor Rush Limbaugh's market is being sold out from under him. Don't they have any loyalty? Well, no more than the inevitably, inexorably vanishing audience I guess... :-)

ClearChannel have been losing money and staggering under the onslaught of the new time and location shifted media, so Thomas H. Lee and Bain Capital Partners LLC have bought them out and are going to break them up and sell the assets.

The previous owners are declaring a victory, taking the millions and hightailing it out of there.

[dead pan voice] Hoo-ray!

----

I see from my stats that more and more of you are taking my advice and using iTunes (and some of you are even using iPodder ) to download the show.

How 'bout sending me an email ( to charles at MSBPodcast.com ) telling me what you're using to download this very show.

I don't sell your email addresses or send out spam. I loathe the stuff being afflicted with it myself. (I have to keep an open address myself since I don't know which of you out there will be writing to me.)

----

Things in the blogosphere seems to be going well, as reported by MDMHvonPA last week in his Roundup. ( http://media.libsyn.com/media/msb/msb-0081_MDMHvonPAs_Roundup_06.11.14.m4a

The advertising model for this show is to refer people back to a relevant episode and charge advertisers by the download. [ I can dream, can't I? ]:-)

For those who think I'm a freakin' awful news reader, myself among these, I would just remind you all of the bumbling, faltering, imbecilic, unprepared, totally off-the-point presentation that Senator Ten Stevens (R-Alaska) made about the net neutrality of internet (The audio show will have selected pieces of that speech [Credit: C|Net which itself credits: Comedy Central which itself credits CSPAN which itself credits sheer imbecility of Senator Ted Stevens, which he credits to his parents not strangling him at birth, which they credit on their great self-restraint.])

For all my speech hiccups I certainly don't sound as bad as he forever will. I may slur my speech at times and occasionally loose my place in my script, (I simply must get or make myself a teleprompter,) but I at least have a clue.

How much are we all paying this fool to so-called-ly represent you, Michelle? (at http://icensnow.blogspot.com/ )

(I may not be a citizen but I pay my local/municipal, state and federal taxes. [So much for the principle of "taxation without representation" on which this country was founded, eh?])

A fun little tweak of his nose called DJ Ted Stevens Techno Remix: "A Series of Tubes" is to be found at " http://www.youtube.com/watch?v=EtOoQFa5ug8 "

Thank [insert name of deity here] that he doesn't have a full in office term left.

----

I am the recipient of the most ghastly act of arboricide.

B&H Photo•Video•Pro Audio just dropped a huge chunk of dead tree smugged with inks. I am appalled. 468 pages and there was nothing I wanted.

Music123 sent a much more compact catalog and I dog-eared two pages... I'm not going to buy anything but at least they were 'wantable' enough that I dog-eared them.

But I shop online and I'd rather keep the trees alive, thank you very much.

----

I'm thinking about, but won't bore you with, the "Branding strategy" for this podcast, sort of a "Who am us anyway?" But it will inform my understanding of what I want to accomplish with this podcast.

In it I am asking questions like "Who do I want to reach?". (You of course, but I'm also thinking of how and why?)

Taking control, keeping control and other issues in MNS and in life...

I'm not worried about podfading. If anything its the other way around.

I am frustrated by trying to keep it down to only once a week.

I keep having to select my target and end up missing giving other targets my full attention. I keep throwing away topics and the scripts to go with them because of 'selective timing'.

----

I have changed the theme, style and content of this show yet again.

This episode was going to feature "geek speak" and be heavily laden with object-oriented jargon. As I am winding down this IT career, I wanted to get down, in a copyright-able form, some thoughts I have had over the years. (Actually, since I started as a student of architecture)

It was a reaction to an article in the New York Times issue of Sunday, November 12th, 2006, on web 3.0, aka the semantic web.

But I find it no longer matters to me.

This episode is called "Echoes" because of the music selections but it could have been called "Charlotte's Semantic Web." Be thankful it no longer matters to me... :-)

----

This morning as I write this, I found myself lost in "Fanfare for the Common Man" in a PBS show about "Aaron Copeland". If only I could play it for you.

Its incredible how a series of notes can encapsulate and embody the American spirit. In the same spirit, "Appalachian Spring", with its simple, spare and elegant melody, is like balm to soothe and uplift the soul.

You can't help but feel emboldened by Copeland.

----

Have a happy thanksgiving. (Catch your breath before Christmas shopping.)

msb-0080 Inherent Sence of Justice

msb-0080 An Inherent Sense Of Justice

Feed back comes first so ...

My emails and comments are telling me that people just love MDMHvonPA's Roundup column. (See MDMH, maybe you should be speaking up for yourself. :-)

The link to it is: http://media.libsyn.com/media/msb/msb-0079_Back_for_more....m4a

(By the way, that's the model for running an ad on this show. I just tell you about it and refer you back through the link to actual the media file, which can be any kind of file and as long/large as it needs to be. No more "squeezing" it to fit into a 5 or 10 or 15 or 30 or 60 second spot, according to your advertising budget. You can take the time it needs. :-)

----

Now I'm asking you all for feed back.

I'm wondering about what you, my gentle MSers, thought of George Hrab.

Let me know. I've got a few more tunes that I would play by him but I'm wondering if you liked him too. Its your show too since you are the audience (Notice the continuing absence of Country and Western music Miss Chris? :-)

I know most of you liked Erik Kjelland's music. The email's I've been getting have been all good.

Any of you gone to EverybodyFalls.com and bought the album?

Any of you recommended it to anybody else?

----

The Wall Street Journal ran an interesting feature in their Friday, November 10, 2006 issue.

Thet had a column, the Science Journal, headlined with "Animals Seem to Have An Inherent Sense Of Fairness and Justice."

Two female capuchin monkeys, "Sammy" and "Bias", seem to behave with a sense of moral obligation towards each other.

In a rigged experiment Sammy got some food but in doing so, deprived Bias from getting to her food. Bias screamed blood hell of course.

Sammy then reached out and helped Bias reel in some food, despite the fact that she wasn't under any contractual obligation to do so.

Sammy did so out of a sense of fairness. It wasn't fair that Sammy's actions in getting food deprived Bias from getting her own food.

That behavior violates the "I Gotta Get Mine and Screw You," kind of actions we observe everywhere around us.

That two capuchin monkeys "got the point" while we, the supposedly more enlightened human beings, would either not see any point to collaboration, or would deliberately choose not to collaborate, puts us humans to shame.

How unlike the comportment we see in business which holds that "Its not enough for me to win, the other guys have to lose."

----

Where am I going with this?

We humans put systemantic obstacles in the path to collaboration, cooperation and our own wider goals.

Any help the system gives is given only grudgingly and after the supplicants have somehow managed to jump through all of the hoops the system placed at higher and higher heights and further abased themselves to such a degree, like they've spent everything and have nothing left, that the system just lets some ever diminishing amount of aid issue forth from the collective cloaca.

The people in the system tell themselves that, since they apply the same rules to everybody in our system, they're "being fair", but fail to realize the unnecessariness and unfairness of the entire system in the first place.

Nor do the people in the system recognize that, since its not the only system out there, or even in here, it is unfair to anyone stuck with that particular slice of the health [don't] care system.

For instance, Congress as a great health [don't] care system. But if you're not in congress, and if you're catching this podcast, odds are you aren't, you're mileage may vary, a lot. Like Prius to Hummer a lot.

Any system which is supposed to hand over charity to the needy and has the needy applying suffers from the same systemantic flaw. Those systems are blind from the start, deaf to the pleas of their own constituents and quite dumb.

----

This morning, Saturday, November 11th, 2006, on "The Open Mind" on PBS, they had a medical information show.

Our health [don't] care system is a wonder of schizophrenia and systemantics.

Canada, England, Mexico, even Cuba, might have waiting lists for certain treatments, but the United States of America, home of the wonder drugs and the skilled surgeons, has over 50,000,000 uninsured (and therefore on a "Don't bother showing up!" waiting list,) and around 100,000,000 under-insured (and therefore on a "Its not covered by your plan." waiting list.) And that's out of a population of 300,000,000.

1 in 6 Americans has bupkis, (nothing) "fall off the wagon and we'll run you over" coverage.

1 in 3 Americans has tsuris, (aggrevation) "fall of the wagon and we'll let you get back on" coverage.

That means that less than 2 out of 3 Americans has adequate "fall of the wagon and we'll help you get back on" coverage..

And that's only the insurance.

When we try to collect on that insurance, we quickly find out that there are wide disparities between the country side and the sui- uh, city side.

Unless you're in a major urban area which just happens to specialize in your ailment, you're looking at a long, uncomfortable bus trip. (You're sick aint'cha? [Or did you want to get there on your own dime. {Insurance companies only book airplane trips for their own executives.}])

Health care really is health care if you're in the 1% of the population who can afford to pay. For the rest of us, well we're hanging on to that wagon.

While I can rail freely about systemantic flaws, I can only grumble about systemic ones. Geography is geography.

----

I've been listening to podcasts of CBC Radio's "Quirks and Quarks," the science show, and the BBC Radio 4, "From Our Own Correspondent". The former is positive and hopeful while the latter is depressing. Make that depressingly cheerful and cheerfully depressing.

I am struck by the almost schizophrenic contrast between the news, and the news.

One podcast was sounding hopeful and optimistic about the vanishing fish stocks (I was reminded of "Soylent Green" and the discovery by Charlton Heston's character of "Robert Thorn" of the report that found that "The oceans are dying!")

while the other podcast was being brutally honest, describing the condition of the road (not roads, road,) into, La Paz.

La Paz is in the bowl of a valley, three miles up, carved out by freeze-thaw cycle erosion, not rain or glaciation, hurled up by tectonic collision and loomed over on all sides by the Andes.

The switch-backs leading down the sides of the bowl are pretty much impassable arroyos, except for a very few suicidally steep roads.

The poor neighborhoods live up the sides of the bowl and there are "no" suburbs because there are these friggin' mountains everywhere and they're all going "up, way up".

msb-0079 Back for more...

msb-0079 Back for more...

Feedback comes first so ... actually, feedback is just about all you're getting tonight as I've got lots to do.

I am slowly creating a voice for MDMH because he's too modest to use his own. (Yeah, sure ... No, I believe you... [<mutters: "Wuss...">] :-)

So until that's happened, you'll just have to listen to li'l ole "moi".

Out of deference to some of our listeners, I'll use something generic and not too country as background music...

"So, without further ado, here is MDMHvonPAs' Roundup 2006, 11, 10:

With this week, I think I'll get started by focusing on an AUSLANDER community and some general information blogs. At the top of the list is a LiveJournal community that has so many contributors it can safely go up against the Moonies or Latter Day Saints in the membership rolls. You will need an LJ account to comment, but they are free so go right ahead and register. Just be aware though that some of these folks are a bit rough around the edges so don't get turned off if you find that some of their blogs are 'For Friends Only'. A lot of recent Diagnosed MS folk travel through there..

Two other treasure troves of opinion and data that I've run across are Vicki who just posted about Disabled Skiing trips. You know, it has been a long time since I competed or even strapped any waxed slats to my feet but I might get motivated enough this year to give it a crack. At least I could show the Twin Tyrants of Turpitude that I'm just as good as they are at SOMETHING. Vicki also posts a lot of other information so make sure to visit her at least once a day. You never know what she might unearth.

My other breakthrough blog is a site by a fellow named Stu. I found out about him via Lauren's blog who is also a big Tysabri Proponent. She is making an excellent comeback into the world of 'Highly Mobile MSer'. Wish her luck with her progress. But back to Stu's World ... he has a few tips up for us folk that could probably be taken to heart by anyone. For such common sense things it's unfathomable why we can be so damn hard-headed about it. Take a gander at what he has, but his comments are closed for now so bide your time and say Howww-Deee! later.

On to Heather, who is having a bit of a rough time with her shots. She is getting better, but could use some real-life success stories to keep her hopes high. The rough times with the drugs are the windows in which we usually give up hope and fall off the wagon. I'm sure a little encouragement would go a long ways. Keep it up Heather, I want to run against you in the NY Marathon some day. Charles will be there to cheer us on for sure.

Mmmm, a bit more time for some of our snow-bound brethren. AK-45 Michelle is back from San Fransisco and is announcing that home is where the heart is. Looks like Alaska is a just as good of a place to be a 'Bike Bum' as the more temperate locales of central CA. Her flight was a bit rough on the courage front, but she made it back to the land of ice and snow in good spirits. Speaking of Golden Sun and Snow ... Sherry is making Lemon Snow Cones with her Golden Retriever for anyone who is interested. No? That's ok, she'll make more for you when you change your mind. And with that, I'll sign off and trundle off in the flash-flood rain of a Pennsyltucky fall. I'd wish for snow, but all you western folk stole it all."

Well there you are that was MDMHvonPAs' "Roundup". Yee Haa.

And to end us off, I'm playing "Brighter" by Eric Kjelland off of his "Everybody Falls" CD.

Follow the link and buy the album or suggest (no, put down that tire iron, I really meant suggest,) to everyone you within earshot that if they're interested, they can buy it at http://www.everybodyfalls.com.

That's for me tonight.

msb-0078 I WON'T buckle...

msb-0078 I WON'T buckle...

Feedback come first so...

Okay, this isn't feed back... Its a gripe.

Today as I write this, is November 8th, 2006.

I just went down for the mail.

What did I find waiting for me there?

The "fall" issue of "MS Connection" for the New York City Chapter. Great!

They have events for October.

On October 15th, I just found out they are going to hold the "MS Bike Tour".

On October 23rd, they are holding the 29th MS Dinner of Champions.

On October 28th they are holding the 3rd Annual Manhattan Society Halloween Costume Ball.

They had information on finding out if your polling site is accessible.

Its friggin' November. Are is were already. There is nothing as useless as timely information that's delivered too late.

----

They also had a list of donations. But they didn't have mine.

$2.500 and I have to read about everybody else, from KPMG LLP to the Baton Rouge Area Foundation.... and my name is left off.

Okay KPMG LLP gave a lot more than I did, and thank you very much Kellogg Pete Marwick Group, but a whole lot of people who gave less than I did are on the list.

What? I don't exist!?!

But you took my money eagerly enough. I look at my AmEx statement and I friggin' well paid 'em: $2500.00.

Well, screw that.

Its bad enough that I have to find all my listeners, all you other MSers, the hard way, instead of getting to run an ad in their magazine.

This is in-friggin'-sulting.

I am livid.

I feel like they are pissing on me from left field.

"We've got the list and you dont; nyah, nyah, nih, nyah, nyah."

Yeah, Well fuck you the the horse you rode in on.

If you want to play it that way.

I'm man enough to take on both you and the horse. (I'm going to help Tim Henson with a donation right now.)

I'm am an MSer and I have our interests at heart. I am trying to provide a weekly channel for us to get the news in a timely fashion.

Not "after" the friggin' events...

They can even have their own shows and I can refer back to their shows on my podcast until it becomes dated and/or inaccurate... It won't even cost them anything.

I've already written more about people with MS in ten months than they have.

I have reached hundreds of people. I have reached nearly 3,800 downloaded shows. I am trying to make a difference. Fuck it all, I am making a difference. If you don't like it, though shit! I am a media presence.

I have proved my podcasting model, my delivery model, my advertising model. I have proved "everything".

----

Discovery! I am back to my prime motivator: Intimidation.

I am not "intimidatable".

I have faced some punks armed with a handgun and did exactly the right thing (I'm still alive aren't I?) while retaining what was not theirs to have (Only one of them was armed. [The trick is to let them think they are winning while retaining what really counts.])

The very attempt to intimidate me raises my hackles and gets me to strive further and harder; to achieve goals beyond what anyone thinks can be achieved.

I am many things because of MS, but I am not intimidated by it.

I am not intimidated by failure either.

Its the only way any of us gain experience. Oh we can learn in some dry way from books and from stories, but it doesn't mean as much as actually failing at something or failing at some part of it.

I could write volumes about my failures. (I have written several articles and even had a column for a while back in the nineties [back before some of you were born, I bet.])

Oh, they were not failures to anyone else but me, but everything I have ever done or seen done could teach volumes., and I am an eager student.

I am not intimidated by fear. As FDR said "The only thing we have to fear is fear itself."

I am not intimidated by the future. The small slice of that which I myself am exposed to is as much an opportunity as it is a challenge. The future yawns before us, open to anything.

I am not intimidated by MS. There is so much to learn, so much to explore, so many brave souls to meet. What MS represents is an opportunity to learn and people to know.

I am not intimidated by the Osamas out there. After all, I can only die once and, as sure as I was born, I will die. All they can do is affect the timing of my passage.

I am not intimidated by the absence of support on this podcasting venture, since every idea must eventually come to be recognized on its own merit.

Running my podcasts from my home means that I am doing this cheaply.

Having evolved a time independent and duration independent business model which gives any advertiser the time they need to elaborate on their product or service and hosting their media on my servers gives me a low cost, verifiable revenue stream.

They just have to realize it.

No, they have never seen the likes of me before.

In the mean time, I just have to reach my audience, the MSers of this world, with content and tunes.

And if I'm wrong. So be it. What can I learn from it?

I am undaunted. I am "not" giving up.

I'm going to reach you, all of you.

And we're going to turn demographics on its ear.

In the wider world, you may only be 0.0833% of the population but you're 100% of my audience.

That what counts. God damn it, you count, God damn it, we count.

We deserve a voice.

msb-0077 The Ouch! podcast is continuing

msb-0077 The Ouch! podcast is continuing

Feedback come first so ....

Here's some musings from the Haupertonian MS Cabal

[m d m h von p a's piece didn't make it in time, unless it gets here in the couple of hour, I'll just release it on its own as soon as it does.]

----

Feedback that I've got from the Malcolm Friend of the MSAA, Jaime and Eric Kjelland is very positive. (Erik's now looking into the Podsafe Music Network for spreading the word and the good vibrations wider afield than I want to or can reach.)

Man feel good about that.

----

I had a surprise from the podcast quadrant of the multiverse (whaat?) last Thursday, (2006.11.12)

The BBC put out issue 8 of the "Ouch! podcast" Yay!

I enjoy listening to Mat Frazer and Liz Carr and the rest of the Ouch! crew. And they know about all kinds of disabilities, including MSs' sequellae.

I can only dream of having somebody like the BBC behind me.

But American television doesn't work that way.

Instead it all about the ratings and with a target audience that's only 0.0833% of the population, nobody's interested.

So I'm stuck trying to entice visitors into buying stuff from Cafe Press (the first item in the linkage section at MBPodcast.com,) or to donate via PayPal (the second item in the linkage section at MSBPodcast.com.)

In that respect I'm like Tim Henson of "Distorted View Daily." Unlike him, I've at least got a chance at finding sponsorship. (If you don't know "Distorted View Daily" let just say that its a show that is doomed to be a success, [partly because Tim is such an ass-hole, {and I mean that in the nicest, least malicious way possible,}] but will never attract sponsors because the advertising model is too hypocritical to admit that a sponsor actually supports the show. :-)

And we don't need to go far to get into a non-commercial model coexisting, albeit un-easily, with the commercial model. I'm listening to the "CBC Radio: Quirks & Quarks Complete Show" podcast as I type this.

----

This episode you're going to be subjected to my latest, well, crush does not describe it,
infatuation doesn't do it either, obsession really is too-too much.

Its just that is so rare that you can find somebody who's so damn original and seems to have mastered every genre out there.

Guess what?

That someone is George Rhab...

I've found his stuff on the PMN, the podsafe music network, so I can use it.

I've also found him at the iTune Music Store and at CD Baby. (I've got three of his four albums. I'll get the next one real soon now. :-)

I figure, no I know, you'll either love him or hate him. I can understand that he's not everybody's cup of tea, but just wait 'till the next song and the music will have changed completely.

He's a very creative and inventive soul. I like him.

----

I went to a support group meeting on Wednesday.

The people were lovely and the speaker was a Physical Therapist who was lively and extremely well informed.

It was unfortunately an extremely small group which while making for a very intimate, uh, congregation, does greatly limit what you can actually do.

There are various problems with being in Jersey City. Of course these are related to the usual problems of real estate; those being location, location and location.

Location: We're just across the Hudson river from New York City. Who wouldn't rather be in the Big Apple? (Right up until you try to get around in the Big Apple. Then you'd rather be anywhere else. Its expensive, dirty, noisy, smelly, definitely not ADA compliant everywhere, the subways are only partially handicapped accessible [usually not where you're going,], cabs are hard to get because somebody healthy is going to take it before you can, and its rarely pleasant in the rain or snow. [As "Seinfeld" said in one of his comedy routines, in winter the city has a certain unidentifiable something, but come summer, you know that its urine.])

Location: Through accidents of history, the group meets in the synagogue of a rehab facility. Its merely the latest re-incarnation of the building. It has morphed several times while the MS group has been there. I'm almost allergic to religion in all forms so sitting in the back behind rows of pews, looking at menorahs and an altar covered by a Star of David, sort of gives me a headache.

Location: The location is off the beaten path (read "an access P.I.T.A.") It may be at ground level and the building may be ADA compliant but its tucked away in a dense residential neighborhood where public transportation is problematic at best and parking is virtually non-existent.

Add to this the insurance problems. (Imagine you're an administrator. "What if somebody falls and sues?" [Notice that you, as the fallen, don't enter into this worry. They have janitorial staff to pick up debris; you know, broken pieces like crockery, hip-bones, that kind of stuff.])

Its a considerable problem. The biggest advantage is that, because its been grandfathered into so many incarnations of the building's history, its free and you just can't beat the price.

But the transportation and location issues #3 and #2, are enough that my wife has some idea about alleviating it.

We'll see if she can exercise her considerable charms with Hudson Community College, which is right next to the Journal Square PATH station, has a sufficient parking lot, is already covered by insurance due to the student body using it, meets all the ADA requirements and has a security guard, could be talked into giving us a class room on the first Wednesday of the month. ('Granting us' access to a room might even be part of their fulfilling their community mandate.)

----

The last item on the linkage section is a survey, run by kiptronics on my behalf. It would really help me get to know you better.

I'm still plugging "Who's in control of your multiple sclerosis" by Willian E Code.

----

Don't forget. Social Security restrictions on mobility devices, bad; your vote good.

Now go out there and find which of your politicos can at least pretends he gives a shit.

Use your vote for what's best for you, for a change, rather than just following some party line.

It doesn't matter if you're republican, democrat, libertarian or if you're pulling for "Teddy and the boys" in the Bull Moose party, if you can't be bothered to watch out for "numero uno", what makes you think anyone else will?

msb-0076 Empathy & Sympathy

msb-0076 Empathy & Sympathy

Feedback comes first so...

You guys are in for a treat. I managed to get MDMH von PA to write something about all the bloggers he's been encountering on his travels across the web. I still can't get him to read it so I'm trying something else.

(I now know his real name and he now knows mine. I'm worse off by one hyphenation so, while while I respect his wish for mystery, I don't thing he's that badly off. :-)

Here not, without further ado, is MDMH von PA:

----

A weekly MS Gossip Roundup of all the ups and downs of our fellow MS Cadre in the Blogosphere. Now I know there are a lot of other folks out there with lots going on in their lives so I'm just going down a list and picking up some of the most recent/vocal/prolific blabber-mouths. And yes, I know every time I point a finger there are four pointing right back at me.

First off, let's drop in on PB at The Multiple Sclerosis Companion. She just married off her daughter in a wedding where nothing, absolutely NOTHING went ... wrong. Well, throw me in a skirt and call me Sally. If the big things can go as planned, there is yet hope for all of us.

Dave, at ms not just a diary is doing his best to fend off neighbors of dubious intent and reasserting his desire to be a hermit. That aside, I've never seen someone with so much to say. The blog-mister runs a handful of active literary outlets all while managing to entertain and keep his romantic interests queued up. In spite if what his kin may say, I really do not think he is gay. A bit jolly perhaps ... but the verdict is not out yet.

Pam out of the hinterlands re-emerges with a cautionary tale of woe regarding the 'flu time of the year'. If you are susceptible to UR infections, do not play tough-guy. Myself and Miss Chris can attest that the tougher you are, the harder you fall. And Ohhh boy, what a fall it can be. Need I show you my bruised ankle? But enough of the foot fetish nonsense, I left a link in the comment section at Pam's joint that you really should follow! Also, a linkless community site I've been visiting has some interesting questions regarding this topic. Travis posts 3 times a week and usually has something meaty to chew on. Did I mention he used to be a chef?

A good friend and lovingly maternal mother, Patricia, is contending with a bit of grief right now. Seems to be going around. She put up a wonderful eulogy for her departed friend. Go on over and get the whole gestalt of her post. Leave a comment, support helps.

In the mean-time, a few of the 'AWOL' blogger have popped back up. One of my secret ninja posters is Sister Jane. She shoots from the hip and takes no sass. That said, she is moving on over to the East Cost soon to show us flat-landers just what it means to be from the Fly-Over states. Maryland will never be the same. And unfortunately for Montana, neither will the West. If you are near Gaithersburg, keep an eye out for her and give her a hearty welcome.

Speaking of hearty ... wait ... did I mean 'farty?' Anyways, Linda is back from swabbing the decks with her male counterparts. She is just as cheesy as ever and is soliciting other ms/support folk for some crafty material. She just put up a pretty lengthy post on Halloween History for all you who care to look beyond the commercial factor. Me? More snicker's bars please ... hold the sweet-tarts.

Hmmm, what else ... oh, yes. Some good news and bad news. Friday's Child is professing her love by announcing her 9th anniversary of wedded bliss to Mr Man. No illness, no loss, no hurricane nor dusty ceiling fan can break that bond. They are about to move back into their place down there in New Orleans so if you feel the urge, give her some verbal house-warming gifts. The bad news ... JodyV is closing up shop. Sorry to see you go Mam, you were one of my first links. Wish her well in her future endeavors or beg her to stay.

What? You still here? You want more of this? Huh? Well then, Shoester is railing against the HMO/pharmacy machine. Doug, that name ... as a lawyer, it seems a bit suspicious! As one curmudgeon to another, I hope you get what you need for the pain management. Nothing like a grouchy MS sufferer not getting enough sleep. I think the only thing worse is probably a wife of a grouchy MS sufferer also not getting enough sleep. I am now patiently waiting for the transcendental whack from the Mrs ... OW!

MC-Jamie is ripping it up and going out on the RF to sell that CD. She is one motivated lady. Just goes to show you that there are every-day heroes (heroines?) out there. You don't need to drive a race-car, run a marathon or climb mountains to be an inspiration.

Technorati Tags:Multiple Sclerosis | Heros

----

Thank you MDMH von PA.

I still can't seem to get Mr. Scott Sigler to record a promo for his podcast novels.

Well screw you "Mr. Big Shot, I haven't got time for you and you and your little podcast".

I can tell you myself that his novels (Earthcore, Ancestor, Infection, and The Rookie,) are tightly written, edge-of-your-seat, when's the next episode coming out already, quality writing and well worth the download. (Huh , dude, like its free. Yeah and well worth it. I even paid for Earthcore from podiobooks.com and it was still well worth it.)

----

I'm listening to a podcast of Science and the City, ( http://www.nyas.org/snc/podcasts.asp?PartnerCD=iTunes&TrackCD=pcast ) How Human Brains Are Wired to Connect.

It was actually fascinating to hear about mirror neurons, which fire when we contemplate the motion of others, and which I must have had a plenty since most of my musical training consisted of aping the hands of other musicians and then coming up with my own "dance of the fingers."

Well I was mainly a visual learner apart from learning theory with the pantonal system, (to read about the PanTonal system, go to http://www.thecanadianencyclopedia.com/index.cfm?PgNm=TCE&Params=U1ARTU0002706 and to read about Edward Siegner, my music teacher at Dawson College in Montréal, Québec, Canada, who passed away recently, go to http://dc37.dawsoncollege.qc.ca/news/images/stories/docs/discoverapril06.pdf .)

Now I'm not so sure. I watch videos, like the flailing arms of the dancers in the "Vogue" video by Madonna, and I can't do the gestures anymore, not even in my head. [sigh]

Anyway, it gives us some physiological basis for empathy. It seems that we are able to mirror now only the motions that we observe but also the motivations for those motions.

Actually, that explains the behavior of mobs of people, all feeding off of each other in gestures and in motivation, leading to mob violence or even just prejudicial feedback.

Its rarely good, like in bigotry and hatred, which gets into the evening news, but it can be, like in group nurturing, poly-amory or other expressions of altruism.

----

I'm still plugging Erik Kjelland's album "Everybody Falls" which is extremely inexpensive and supports the Multiple Sclerosis Association of America (the MSAA who can be found at http://www.msaa.com )


Its a good album, well worth listening to and buying. (And because its so lame to just talk about music, I'm trying to secure some rights to play a track off of his album or to get him to put a track on the PMN [Podsafe Music Network.] Done. He replied quickly to my email.)

Here now is the podcast premiere of "Brighter" by Erik Kjelland.

----

I'm still plugging "Who's in Control of Your Multiple Sclerosis" by William E. Code.

----

Carlo Magno will not be completing his trek across the USA because of insurance hassles, plus its snowing sideways (He got out of the snow on the 13th of October and turned around. Smart man... :-). (See his blog at http://www.thespiritofhope.org/blog/ )

----

This week, the show notes are filled with links and that's what we want.

No more suffering in silence, one person at a time; divided and conquered; cast off like lint picked from the cloak of humanity.

I'd like nothing better than to have all 300,000 MSers in my address book, ready to answer a call or reply to an email from any of them.

Okay, its not pure altruism. I figure Dr King was right and that none of us is free while any of us is in fetters.

----

Don't forget: Restrictions on mobility, bad. Our vote, good. No go out there and bug your representatives.

msb-0075 Care to share

msb-0075 Care to share

Feedback comes first so...

Dave, okay you don't like country and you didn't like "Lars needs Women."

Well what do you like?

Seriously. Its your show too.

Give me a genre and I'll look for it on the Podsafe Music Network.

They've growing their collection so they're growing the pool I can swim in.

You don't like country music. I do. I like anything thats well played.

You didn't like "Lars needs Women I did. It thought was funny. Like I sad, I like anything thats well played. (Even "ThrashMetal" but its never well sung. On purpose. :-)

----

Here again is my advice on podcasting, on iTunes (or some other podcatcher) and the iPod.

"You don't need an iPod. (which is also the title of a song by "Uncle Seth" which you encountered on msb-0068 Memes, Words, Phrases and Sentences.)

That's only good if you want to carry the show around.

You don't even need iTunes (though you can get it for free at http://www.apple.com/itunes/download/ )

Its not the only podcatcher out there. (There's also iPodder at http://www.ipodder.org/directory/4/ipodderSoftware )

Its just that its extremely convenient to use iTunes.

If you had it, you could just open a web page on my podcast (at http://phobos.apple.com/WebObjects/MZStore.woa/wa/viewPodcast?id=120932170
) and say yes to all the questions until you see my late, great cat Wiki and then simply subscribe.

Its the easiest way really."

----

There were a couple of good articles in the music section of the Sunday New York Times. You might want to check it out...

----

We are the proud slaves of a fifteen pound, female "Maine Coon" cat.

We let the cat scratch out her name to us: "Aixe la Chapelle!" (Okay, she only scratched out an "X" in the sand of her litter box. Give her a break, eh...)

Lord help us....

We have a cat who wants to bring a balanced equilibrium to ruling.

She's not dealing with the issues of this millenium.

"Le traité d'Aixe la Chapelle" was designed to ... oh shit ... it dealt with the place of Turkey in Europe in 1818. Now they're in; only 200 years late...

Maybe our "Euro Kitty" knows more than she's letting on. :-)

----

Kee'rist. I've been going over my posts and some of the comments I've been leaving on my blog ( http://multiplesclerosisblog.blogspot.com/ ) and on other people's blogs (all linked to from my blog,) and I'm such a blow hard; they read well but I sound/read like some kind of freak :-)

I really must thank mdmhvonpa for providing the initial list of bloggers.

I'd love to be doing this show with him.

He seems to have a presence and provides quick, pithy aphorisms to everybody. (Hey! Want to try it? Drop me an email: charles [at] MSBPodcast.com. We could do something that would relieve my poor listeners out there. )

----

Erik Kjelland recorded an album called "Everybody Falls" for the Multiple Sclerosis Association of America that "deserves" your support. ( http:/www.everybodyfalls.com or http://www.brightercd.com/purchasethecd.html )

You should "buy" it, and I'm not saying that just because I did.

Since its for the MS Society, I don't think they'll mind if I play a snippet.

You are more likely to tell your friends about it and get them to "buy" it.

They can even come and play the snippet off of this show, for free, and get the ordering into off of the show notes of directly from the show links.

Actually, it sounds pretty darn good.

Its well produced.

Its got nice, straight-forward vocals.

But I do take some exception to labeling the tunes as Rock.

They are simply too melodic for that and the guitar is definitely not "heavy." (Not a bad thing. :-)

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PBS just ran a fascinating special called "Remaking American Medicine." ( http://www.pbs.org/remakingamericanmedicine/care.html )

It states that, like all human endeavours, our health care suffers from the same basic systemantic flaw, and that flaw is that systems oppose their own function.

(To read more about systemantics head to http://www.generalsystemantics.com/Systemantics.htm or buy the book
Systemantics™. 2d ed. 319 pages. 1986. ISBN 0-9618251-0-3 [Softcover])

Just like Social Security would perhaps be better labeled as Social inSecurity, our health care would perhaps be better labeled as Health don't Care.

Its run, by the state or for profit, by healthy people, and consists of as many hoops as they can think of to place in the way. They're just doing their job, its nothing personal...

It also consists of a myriad of systemic obstacles, and therefore systemantic constructs, to the actual delivery of healthcare.

First and foremost of these is that doctors are not paid to take care of you when you're healthy. They are paid only for treating you for something, (and honestly, you're not guaranteed of anything as they're only practicing medicine.)

(Go for an annual check up twice a year and see how much of that will be covered by your insurance.)

----

Next comes with the duplication of record keeping.

If and when you move, none of your records are available unless you specifically request their transfer, in writing.

(Good luck in getting transfered without an expensive power of attorney if you can't write for any reason. If you can't pay, roll up your arm and bend over.)

In my travels across America (both through Canada and through the United States) and in Europe, I have seen dozens of doctors, dentists, clinicians, pharmacists, therapists and specialists none of which know about any of the rest.

I have seen the inside of far more clinics to confirm what I already knew than my legs can now manage in a single trip.

And none of the records acquired in one place are available in the next place.

I have had to fill out the same damn forms over and over and over.

(I have given gallons of blood unnecessarily, just because none of the doctors had access to another's doctors results. [And I hate getting stuck and bled. It increaces my chance for an infection and potentially for an exacerbation every single time.])

Curiosity killed the cat, and I'm not taking any bets on the longevity of this reluctant patient.

Basically, we have to start keeping and transporting our own medical records in a USB dongle because if Doctor A doesn't know about what Doctor B's doing, he's likely to reorder a test uselessly, or to do something counter-indicated (read stupid) and possibly kill us.

We can put multiple megabytes of information on there and the doctor can add his new info, or save us all a lot of pain and waste of both time and money re-ordering tests.

If you hear any guff about patient confidentiality from any wise-ass, just tell them you're the patient and you demand that you be provided with a machine readable copy of your records.

There's CPT and IDC-9 data on you, prescription and medication interaction information and you're not leaving without a machine readable copy of your information.

And the next time you're handed one of these stupids forms to fill out, just hand them the dongle and tell them that they can copy all of the info there. (I figure if enough of us treat them like they were poor, stupid and ignorant, they'll eventually get the message.)

----

Now that we've got our end of this handled; (we want our records damn it and we're going to make their lives easier if it kills them,) how do we get the poor (*cough* *cough*) doctors to stop having to fight with the public and private plans out there.

Shared care implies shared funding.

That implies a single payment point. Given the reticence of the Federal gummint to do anything not involving shifting rubble in foreign parts, I wouldn't count on them for a thing.

Next best thing, implies 50 payment points, State by State medical plans, with coordination on expenses by CPT and ICD-9 code.

The health care providers have got to be stopped from playing their stupid friggin' games; calling the same part or procedure by different names and/or numbers and having different price structures depending on what they can get away with charging by using the old divide and conquer technique. (The term ripping off the unsuspecting comes unbidden into my mind.)

Just look at three different hospital's records from just three different parts of the country. (I have,) and check out the myriad of inventory part numbers for the same part and the myriad of prices for the same part too.

Each hospital has its own price list from each manufacturer. Each manufacturer has its own price lists for each hospital.

Enough of that shit.

If its a procedure or part, I want it to be called the same thing and to cost the same.

I don't want a price based on whether I buy it in one state or the next.

----

Then we'd only have one worry left; getting ripped off by less that scrupulous health care administrators.

That's what regulators are for, with stiff prison terms if they fail to regulate.

Honestly, we have got to start making these companies play fair, on a level playing field.

The problem with Adam Smith's "invisible hand of the market forces" is that its attached to an arm that is getting twisted into a pretzel.

Companies never play fair.

They're always trying to get an advantage not based on the quality of their products or their services.

They never want to compete.

Fine.

They already have a patent system to take care of that.

But that doesn't seem to be enough, does it?

Lets set the prices and take competition right out of it, or at least to another level entirely.

----

Medicare mobility devices cutbacks on the 15th, bad, our votes on the 7th, good.

Go and bug your representatives.

msb-0074 Dangling over a precipice

msb-0074 Dangling over a precipice

Feedback come first so...

I've been in touch with the people over at "Faces of MS."

I have given permission to use my, uh, smiling contenance, (sounds better than my ugly mug,) on their annual report.

It seems they wanted to run local New Jersey faces rather than using faces from all over the nation.

Hey, whatever... I'm just glad to do my bit.

Maybe they'll ask me to run an ad, which means that I'd run a show called "Faces of MS" and you'll get a show featuring the organizers.

----

To 'Miss Chris' we're all pulling for your husband. (But not on him. Since we all live in different directions, that could get messy. :-)

I got some feed back from Jaime from Alaska.

She finally caught MSB-0072 and she loved the song "Reinstalling Windows". :-)

That's a vindication as far as I'm concerned.

I hope their both enjoying her and her daughter's trip to San Fran.

Now if I could just talk the rest of you people into using iTunes and subscribing to the RSS feed of the podcast... Instead of going to the page over and over again.

(My stats are showing "up". And half of those are coming via subscription. But that could be a transient ... Still ...

Wow! My words are having some effect. [I can't tell you how I've often felt like I was the world's biggest wanker for doing this podcast {and yet I'm "sure" that it is one of the best ways for disseminating talk and tunes to everybody with MS.}])

I'll soon have pictures of my new cat to put in my images to sell on items on my store.

She's a Maine Coon cat and big. You'll probably hear more about her as she's a rescue cat and I firmly believe in rescuing animals.

She's got a divine purr and we already get along great.

I let her sleep and she lets me type.

The link to the store is on the webpage at MSBPodcast.com.

Maybe you could use a "hoodie?" (I know that its getting cold out there 'cause its getting cold in my s.o.h.o., [and I wish they'd turn the heat on already. {I'm an "owner" of this friggin' condo and Lee sits on on the board, so you think that I'd be informed. But, no...}] :-)

----

For Suzy and Friday's Child, I'm going to quote myself here.

"You don't need an iPod. (which is also the title of a song by "Uncle Seth" which you encountered on msb-0068 Memes, Words, Phrases and Sentences.)

That's only good if you want to carry the show around.

You don't even need iTunes (though you can get it for free at http://www.apple.com/itunes/download/ )

Its not the only podcatcher out there. (There's also iPodder at http://www.ipodder.org/directory/4/ipodderSoftware )

Its just that its extremely convenient to use iTunes.

If you had it, you could just open a web page on my podcast (at http://phobos.apple.com/WebObjects/MZStore.woa/wa/viewPodcast?id=120932170
) and say yes to all the questions until you see my late, great cat Wiki and then simply subscribe.

Its the easiest way really."

----

I know I'm now committed to blogging and podcasting once a week but I gotta tell you, I miss doing it twice a week. Okay, it shouldn't seem like so much but I miss it.

Podcasting, even with this shaky voice and lousy reading ability, just feels so great.

I enjoy digging up tunes for you on the PMN (Podsafe Music Network) and unashamedly venting whatever things were bugging me, (and from the email feedback I was getting it must have been bugging some of you too, [I still wonder how that lady got my podcast or my email address {The Luddites are all over the place.} I'm surprised she didn't write me by a quill pen plucked straight from a duck's arse.])

Well, I'm commited that its once a week.

I do wish some of you would record messages on the Odeo voicemail.

----

It seems we dangle over a lot of precipices.

We're all dangling over the same precipice, insecurity, but MS adds to the height we must fall.

Its not just job insecurity, and some of us are a bit beyond that, but its about our health and our health care.

There is something specially worry-some about the future.

Its very vexing to goto bed at night and not be sure that we're going to wake up with the same capabilities in the morning.

The reason that we're not sure compounds the worry.

With MS, stress is definitely a factor.

I think that my last attack was due to a prolonged period of stress. (Now, I no longer give a shit and everything seems to be stable with my nervous system... [Would that I had learned to stop worrying earlier, {but hindsight is always 20/20.}])

We stress about our level of disability, which can lead to an exacerbation and an exacerbation can lead to an unpredictable level of disability, which caused stress in the first place. (Sort of a "No Win" "death spiral" kind of situation.)

That's why I recommend "Tai Chi" or some form of exercise requiring concentration to every MSer.

It gets you to focus on something other than the stressful uncertainty and gets us to try things that can acually help us.

The very attemp is bound to ease our stress and any success is bound to help our attitudes.

----

Kim Jong Il; someome else who's dangling over a precipice.

Boy is he sorry he ever held the nuclear tests. He let the cat out of the friggin' bag. Now he wants to get back to the negotiating table.

Some diplomats from China went over there and probably explained to him what I said was his problem now, in much more diplomatic terms, but in a very real way. He can't use it and now he doesn't dare sell it.

Until he gets off the self-serving, paranoid "imperialist war mongering Americans" ranting, gets his head out of his ass, and gets North Korea's economy aligned with the rest of the planet's, he is now at a very real risk of getting his ass atomized if anything nuclear happens to anyone, anywhere.

And he's not Muslim...

There's 80 times as many Muslims as there are North Koreans.

----

The information on which we all rely, the health-care providers, doctors and health researchers that we use directly and indirectly, is dangling over a real precipice.

PBS had something about "Net neutrality" (yesterday as I write this,) and I whole-hearedly recommend that you go there (at http://www.pbs.org/moyers/moyersonamerica/index.html ) and check it out.

It made it abundantly clear what the phone companies and the cable companies, who have been charging you for fibre to the home and have been getting huge tax subsidies to bring you fibre to the home besides, for the past twenty or so years, have "not" been doing for the past twenty or so years; bringing you fibre to the home.

The development of RSS may be great for simplifying syndication, meaning that you can pick up new episodes of things automagically and downloading them in the background at the system's convenience, but the power of the iTunes music store and the real power of podcasting is that it is able to thrive in a bandwidth deprived region (and if you're in the United States, you are in a bandwidth deprived region of the world.)

The telcos and the cablecos have had it illegally sweet for over 20 years and they are now pulling a fast one in Washington by re-defining their roles as common carriers into several levels of private carriers.

They want to charge their customers are both ends of a connection.

By 'promissing' the customers different things at either end they will be able to choke off any packets from a specific source, just like China is censoring the web and the internet.

What is at stake is your right to get information on anything and everything. By effectively being able to choke off the on ramps from servers, they will be able to bring you some packets at dial-up speed while bringing you some other packets at broadband speed.

Since the information economy belongs to the swift, they will be able to effectively kill off, say Yahoo, at the expense, literally, of say MSN or Google. The swift will be those who are able to
pay the most.

What this means is that start-ups will have to have very deep pockets indeed and when you're starting up anything the last thing you have is deep pockets. There will be no more Googles.

The true power of the combination of RSS and podcasting is that we are relatively immune to this attempt to choke off the information flow at our consuming end.

Though the lower over all bandwidth ultimately means a real cap of the amount of information we can take in.

86,400 seconds per day is an obsolute. At 56kbps that maxes out at 604,800 bytes.

So much for downloading multi-gigabyte movies over the phone lines. Even at broadband speed, its a lenghty stretch.

That leaves the producer or server end. Imagine that the internet cloud is now able to choke off how much information it is willing to take. You can't scale up for increaces of popularity by just getting another line into it, you're also going to have to buy service at the speed you need.

That's going to cost a lot more and that cost is going to get passed on to you.

I find it amusing, in a wry, disgusting way kind of amusing, that my rant on Osama last week, about his ending up king of an mole hill instead, of letting people climb the same mountain, applies to the telcos and the cablecos as well.

I just might head back to Canada because of the ramifications of net neutrality.