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intro
Disclaimer! Disclaimer! Disclaimer!
MSBPodcast is "not" any kind of a medical podcast.
It is by and for MSers.
Its purpose is to keep us entertained, to explain our symptoms, to remark on our discoveries, and to raise the general consciousness about our disease.
The path to illness is shadowy, murky and rough strewn.
The path to wellness is lit by the lamp of knowledge.
----
Feedback comes first, so...
I just saw a video on "YouTube" [ http://youtube.com/watch?v=LHtNFZ6K0pE ] which I am featuring at the front of these posts. Its an hour long so sit in front of your computers on a comfy chair with a drinkable and your favorite munchable at hand because it is well worth watching.
In it I found the phrase "The Inequitable Distribution of Luck", 24 minutes into it, which describes our situation to a tee.
---- "stuck in an office" by: "Edmund's Crown" http://edmundscrown.com/
Feed Forward comes next, so...
This is "your" segment.
Say "your" piece on this segment.
Share with other MSers whatever "you" want to share.
Drop me an email: "charles at MSBPodcast.com"
----
The wiki is out in beta on my "home server" [at http://wage.packet.org/ ] (I will eventually give it a real name, [ www.msbwiki.com, unless somebody sweeps in and steals it. {It doesn't matter if anyone does because we'll all be able to Google it, or get to it through links. (so I could call it by its IP address and it wouldn't matter,)}] we'll get some real bandwidth from an industrial strength server, and I'll put in any and all of the missing multi-media, Google and Amazon apps features. (I've even got myself a "Flip video" [ http://www.theflip.com/products.shtml ] to try out the multimedia portions. [Yup, you'll get to see my ugly mug.])
You're invited to come and hammer at it, make any changes you feel are required and have fun. (And don't worry. Every version of a page is kept, so I can always go back to an older version.)
You will all be required to login and the verification will be done through email so we can eliminate all the spammers and other nasties.
----
I've been tasked by my "self-help group" [ http://wage.packet.org/mediawiki/index.php/UsaNewJerseyHudsonCountySelfHelpGroup ] of the local chapter of the "NMSS (National Multiple Sclerosis Society)" [ http://www.nationalmssociety.org/index.aspx ] to handle the notification of the media about the society's meetings. Press releases.
They handed me a few sheets of paper stapled together. What the Hell do you want me to do with that? I immediately put them on the wiki, with hot-links to the local newspaper's and peoples' email addresses, (which I am still gathering, and adding in.)
The press releases will be going out by email from now on and be a whole lot easier for the papers to handle and make "camera ready" [ http://en.wikipedia.org/wiki/Camera_ready ] for printing.
----
Maybe you will want to create your own pages, fill in your own calendars, guide people to your events through Google maps, take pictures or shoot videos of your own events.
That's what the wiki's for...
----
And, just so's you don't think that I'm all talk and no action, I'm giving a lecture to the group in September about the web and the disabled, (and going to give away one of my old computers to help one person get connected.)
I see the "OLPC" [ http://laptop.org/ ] (One Laptop Per Child) initiative as needing some expansion to OLPD (One Laptop Per Disabled) because the disabled need the internet every bit as much as, (and arguably they need it much more than,) the heathy. (In fact they need it to make the "differences" between differently abled people irrelevant, [just like the internet makes distance and time irrelevant.])
There is nothing quite as useless as information printed out on a piece of paper. Its all unlinked; devoid of context and, like us, quite pathetic when alone.
But together, in a network, it (and we,) becomes part of a nexus of revelations, of relationships and connections.
They handed me a few sheets of paper stapled together. What the Hell do you want me to do with that? I immediately put them on the wiki, with hot-links to the local newspaper's and peoples' email addresses, (which I am still gathering, and adding in.)
The press releases will be going out by email from now on and be a whole lot easier for the papers to handle and make "camera ready" [ http://en.wikipedia.org/wiki/Camera_ready ] for printing.
----
Maybe you will want to create your own pages, fill in your own calendars, guide people to your events through Google maps, take pictures or shoot videos of your own events.
That's what the wiki's for...
----
And, just so's you don't think that I'm all talk and no action, I'm giving a lecture to the group in September about the web and the disabled, (and going to give away one of my old computers to help one person get connected.)
I see the "OLPC" [ http://laptop.org/ ] (One Laptop Per Child) initiative as needing some expansion to OLPD (One Laptop Per Disabled) because the disabled need the internet every bit as much as, (and arguably they need it much more than,) the heathy. (In fact they need it to make the "differences" between differently abled people irrelevant, [just like the internet makes distance and time irrelevant.])
There is nothing quite as useless as information printed out on a piece of paper. Its all unlinked; devoid of context and, like us, quite pathetic when alone.
But together, in a network, it (and we,) becomes part of a nexus of revelations, of relationships and connections.
---- "Post Office Jesus" by: "Little Fish Big Pond" http://myspace.com/littlefishbigpond
Feed Me comes third, so...
Do you have a therapy, product, good or service that is of interest to MSers?
Consider advertising on this podcast.
Reminders on this segment only cost $0.03 per reminder per download of an episode. (A $30CPM targeted at MSers.)
It can/should lead to a full ad, in text, audio or video, which costs $3.00 per download.
That sounds expensive until you do the math and realize that if nobody downloads it it costs you nothing, unlike print, where you often can't even get an ad in to the specialized journals, or radio or TV where you'd just be wasting your money with the 0.0833% MSers rate of return. (That's about six times "below" the level of "statistical noise".)
But MSBPodcast is 100% in your market, and you only pay per download of your material.
No play, no pay.
Reach the MSers who would buy your therapy, product, good or service, with-out having to waste your advertising money on anyone who is "not" interested...
Send me an email at: "charles (at) MSBPodcast.com"
---- "Officer Downe" by: "Matt Mays" http://mattmays.com/
"Thesis:"
"The Inequitable Distribution of Luck" is such a good phrase that I wish I had thought of it. (Or maybe I did as I was shlepping around Metropolitan College with my red cane studying Vilfredo Pareto and the "principles of economic efficiency" [ http://en.wikipedia.org/wiki/Pareto_efficiency ] but never thought I ever use it again. :-)
Getting MS is due not to the tyranny of place referred to in the video, but it is due to something far more random than that.
Through sheer happenstance, I just got blindsided by a bus with the license plate "MS."
---- "Officer Barry" by: "Rich and Royal" http://www.richandroyal.com/
"Synthesis:"
The inequitable distribution of luck tell us that, no matter well how one plans, strives, works for and even achieves in this life, the sad fact of it is that the odds are that 15% of the time, he (or she, [lets not be sexist here,]) is S.O.L.
Now, if you're a captain of industry, you wish you cloud just jettison the burden of taking care of your employees and be able to focus on the bottom line. This burden is fiduciary and its interfering with your fiduciary responsibilities to your share holders.
That's just an unfair legacy from the days of "Tricky Dick" [ http://en.wikipedia.org/wiki/Richard_Nixon ] when he was making a deal for "pals" he never knew he had, over at "Humana." [ http://en.wikipedia.org/wiki/Humana ]
Now that the HMOs aren't growing anymore and starting to pay out they're becoming an unacceptable burden on the corporations who aren't in the business of doing anything for people.
So who's going to pay for health care?
Well, if companies and corporations aren't going to take write the checks, I guess if falls to the same people who write the checks for most of defense, most of transportation and most of the legal system.
"Congratulations!"
You've just arrived at a single payer national health care policy, by default.
Unless you "want" to go back to the social situation of the sixties, where Kennedy and Johnson were struggling with forces that were just about revolutionary and people were dying left and right, once their life's savings had been wiped out, (and in this the "richest nation on earth", [we certainly weren't supposed to die like bloody bushmen living in bloody Papua-New bloody Guinea, {after being cannibalized.}])
Nah. I think a single payer system would streamline things and get rid of enough frau... uh, sorry, redundant, confusing, and error-prone systems, to leverage a great many more benefits from the system and rationalize the benefits for the current and for the future generations.
(After all, once you've got everybody, there's nobody left, is there? [Well, there are always those outside the United States, like in the North American Union, the OAS, and South America, later you can go after some sort of harmonization with Europe and then there's ... well you get the idea. here's an entire planet to organize. No one should feel his ambitions are being thwarted...])
This new gummin agency doesn't make decisions except at a kind of macro level.
Either it falls on one side of an overall cost/benefit analysis razor or it doesn't.
Hey ... "Everybody" dies.
Deal with it. (If you can't deal with it, I just hope you're rich enough to buy the few extra days, weeks or months that it would buy. ["Joe DiMaggio" died anyway and you know his estate got stuck with the bill.])
---- "Office Suite, Part I" by: "the matthew show" http://www.thematthewshow.com/
"Conclusion:"
I won't bemoan my fate (I could have been born a hundred years ago, in "Papua-New Guinea",) [ http://en.wikipedia.org/wiki/Papua_New_Guinea ] but getting MS is still a bitchin' turn of events.
"The Inequitable Distribution of Luck" isn't totally working ag'in' me though.
I live "here", [ http://en.wikipedia.org/wiki/United_States ] instead of in Papua-New Guinea, now, instead of then, and you "are" reading/listening to my words.
Lets build on what we've got, with what we've got.
---- "The Loneliest Boy In Toyland" by: "the matthew show" http://www.thematthewshow.com/
Outro
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