Wednesday, March 29, 2006

msb-0010 Vilcomen, Bienvenue, Welcome, Howdy... (Again)

Hello and welcome to the MSB Podcast.

For over 100 of you already its: Vilcomen, Bienvenue, Welcome, Howdy ... again. Glad to have you back.

April 6th, 2006, is the inagural launch of the as a bona fide business venture.

To the audience out there:

Tell your friends, and any fellow MSers you happen to meet, at a convention, at a meet or at a bar; tell them about this podcast, about podcasting in general and about the iTunes Music Store.

Heck, bring your iPod along and show 'em.

The MSB Podscast is the easiest way to get them to hear some MS news, some MS views, to get some info about MS, MS services and MS products, and, of course, to hear some podsafe tunes.

Hopefully, everybody will find something here that will light their lamps.

If not, you can write your comments on the episode that ticked you off on the page or you can just email me at

Why? Because this is your space too.

What do you want to talk about, hear about, see?

What do you want to us talk about, hear about, see?

The feed back mechanisms are there for you! (

I'll be driving the listenership from other directions and we'll meet in the happy middle. (And thank you so much everybody who'se joining on my frapper map. Its slow but its growing.)

Remember a fellow MSer, Ms. Amanda Monaco, as she runs the Race for MS and join "Team Biddy". Head over to her site,, and just do it. I'll be doing my bit that's for sure.

And I will soon be meeting with Ms. Monaco in Manhattan at the Millenium Hilton, in front of the hole in my heart and in the heart of downtown New York, to discuss her MS, her musical career, her future aspirations, and I promise to shut up and let her talk.

To advertisers out there:

If you have any special messages, events, services or products for helping people deal with MS, the MSBPodcast is the best, most effective way to reach out to them.

The National MS Society is considering getting into podcasting. Let's hope that all 'boutique disease' get into podcasting. (What a high-faluting way to say, you're sick and its not just a cold.) Its a way to get the word out to interested people in ways that traditional media can't.

Face it folks, traditional broadcast media and even cable television with their promise of community cable channels, have failed us all terribly, and not for reasons of cupidity, though that has been a real factor, but because transmission of the kind of information we MSers need simply isn't possible under the economic structures of the broadcast model of media.

If it was we'd be there already.

The "Race For MS" events barely rate a mention on the evening news on the day of the race itself. That simply isn't enough.

For regional MS Society Chapters, like those in New York and in New Jersey, the MSPodcast service can even be localized so you can get chapter news out to a specific region, state wide in any of the fifty states or ten provinces (Même le Québec peut avoir son propre canal de diffusion pour ses événements.) Guess I'll have to learn to write and speak proper Español next.

And I have a special incentive to drive our MS market.

Podcasting is The Magic Bullet. (©TM® :-)

The MSBPodcast reaches an otherwise invisible demographic, people with MS, without regard to any further demographic, geographic, psychographic or behavioristic marketing divisions. Instead of being merely one in twelve hundred, the membership is 100% in your marketplace.

The MSBPodcast does so without worrying about any schedule either for ad delivery or for ad duration.

You can write an ad, or I can write it for you, you can produce an audio or video spot, or I can do it for you, for your event, for your service or for your product, whenever there is something new to say.

The ad can persist for weeks until all of the audience is reached.

And they can be reached in a manner that is not annoying to them and when they are receptive to the messsage. Yeah, they can skip over it like TiVO, but it has not disappeared from the podcast. They can go back and get it when they need it.

Get in touch with ( for 15 to 60 second audio spots.

Send an email: or telephone: 415-573-9332 about getting your ads on the MSBPodcast.

For special projects, such as long audio or video pieces for your ads, send me an email: or telephone: 718-813-6111 and we can set up your content.

And you don't have to worry about podfading like some shows.

I've got MS and its not going away but neither am I.

I'm not doing this alone and can ensure that the episodes will just keep on coming even though I can't predict my role in it.


As an example of the kinds of savings that can be achieved: Out of the blue, I never asked for it, I received in the mail today (03/29/2006) a package (mailed on 03/27/2006) from MS Pathways on Betaseron (Interferon Beta-1b).

They used my address, never mind how they got it, but its hard to find us MSers, to spend $4.20 to send me a package about their drug/therapy. That's $4.20 and it was not the drug, just info about the drug.

I got a video tape, a DVD, (I imagine that its got the same content, I haven't played the tape,) a whole bunch of booklets and pages of 4 color printed material that I'm sure that it cost a great deal of money to produce, package, box up, mail (and it got to me slightly damaged.)

Great! After their arboricide, I now have a static version of the package. I'll probably never hear from them again and never know what they've done since that package got put together, just like I didn't have a clue about the incredible strides that had been made since my first attack. (I was still thinking that hospitals were using ACTH. That was enough to scare me into being healthy for fifteen years.)

So how much would it have cost to just send all the information, video and pdf files, as a part of the podcast?

They could have sent the latest and greatest version of it to all of my subscribers for maybe $0.025 per person, that's right, a pennies instead of $4.20, and kept it up to date to boot.

Or I could even have done a special show for them about their product.

The following day, I received another package in the mail for betaseron. It cost them $4.05 just to mail it.

Same story. Same price, same cost per patient, same cost savings by using this site.

Personally I use Rebif.

It had the least offensive self-administration regimen of the treatments available that I was aware of at the time.

Even with the RebiJect, its still a big "yeech" to inject myself.

I have this thing about my skin. I like it whole and without holes.

I'd like it better if they'd find a way to depress my immune system without having to depress me at the same time.

I'd volunteer for a trial for vaporised prion treatment, like from an inhaler. Or maybe they can find a way to soak it into a cigar. That I'd go for... :-)

Meh? ...


Now, on with the show.

And what is the show?

Well, I've been hearing from some people and some MSers that I should not expect much in the way of user feedback. (Thanks to all the guys at BarkeyRex and special shout outs to Juliana for being an inspiration, to Rachel Knight for being an awesome writer and another inspiration, and all the other people I'm not mentioning, including a fellow MSer woman with amazingly lustrous, luminous skin that I met back in Ottawa, lo those many years ago.)

I'm thinking that one reason it happens is because most people put fear of speaking in public above almost anything else, including dying suddenly in some horrible freak accident. (I can just hear my mother saying: "While wearing dirty underwear.")

A long time ago, like 1983, or early '84, while I was in Bethesda, Mairyland, at IBM for a course, I overheard somebody giving a speech in front of some people at a Ramada Inn.

The poor man's voice was cracking and trembling; his timing on his introductory jokes was so far off that that was funny; and he was dying up at the podium, just dying. It might as well have been a pilory he'd been tied to and he was trying to duck rotten vegetables.

I'd have hated to do his laundry the next day because his flop sweat had probably soaked through to his overcoat.

Here's something I'd figured out years before, when I was playing my guitar in front of an audience.

Stage fright is what you get when performing or public speaking.

It never happens.

When you're facing a crowd, speaking or playing to more people that you're ever likely to meet in your living room, dont!

Nobody can be expected to speak to more than one person at a time.

The trick is to speak to one person (sometimes as if somebody's life depended on it, like you were making an empassioned plea, like Portia in "The Merchant of Venice",) and let the others just sort of ... listen in.

Pick one or two or at most three individuals in whatever crowd you're facing to communicate with, not to talk at, to communicate with.

And talk with them, play to them, play with them, make verbal love to them. (I don't advise making real love with anybody on stage, well not unless you're an exhibitionist, and not in the States. You'll find yourself in the hoosegow before you can detumesse.)

Let the other people who are there be voyeurs and get a contact high from being near the individual with whom you are speaking.

Later you can work on moving your focus to be a different person each time you look in a given direction.

That's how you achieve stage presense and avoid stage fright.

Start small and stay small, even though you're drawing a bigger and bigger crowd.

You're still playing to an audience of one and all the others are just eavesdropping.


My, wasn't that instructive? I'm giving away all kinds of secrets today.

Now why would I do that? :-)

Is it because I plan to record interviews with people and intend do haul around my PMD670 and a couple of mikes around to lots of places and don't want you to be scared?

Could be...


Now with email, people shouldn't have any excuse, right? Wrong!

Most people are as scared of writing as they are of speaking in public.

When you're writing you have to organize your thoughts and you don 't have the constant interplay of non-verbal cues to clue you into whether a message is being properly interpreted, despite its being imperfectly sent.

Usually, a comedy of errors ensues and that has been a staple of dinner theatre since Oscar Wilde wrote "The Importance of Being Earnest."

Good writing is hard. (As can be attested to by Mark Yashimoto Nemcoff, of "Pacific Coast Hellway" and "The Art Of Surfacing" fame, and by fellow MSer Rachel Knight of "altenativekitten" and "Begging Mercy, Offering Grace." renown.)

Filling an empty page is only the beginning of the battle.

Its merely the scaffold on which you hang an idea.

If you are lucky and have enough practice, you don't have to rewrite too often, too much or too drastically while you hunt for the mot juste or tour de phrase that will set your reader's minds agog, being stunned by your tranchant wit and your mordant insight.

Often you find a way to precisely express a thought, only to discover that its turned the entire surrounding paragraphs into utter gibberish.

Memes are mean, man.

Rewriting's tough.

People have trouble in English with deciding on timing.

They get tense over tenses.

English is also a hard language to spell in since words sometimes don't look like what they sound like. (French desn't suffer from that particular problem. There are pronounciation rules which mean that you may not know what a word means but you can be pretty sure of how to spell it in writing once you hear it and say it once you've seen it written down. You just don't have a clue as to what you're blathering on about.)

My advice to people on writing is to take their time and break out a thesaurus.

This has two benefits: 1) they get a wider vocabulary and 2) their writing usually has slowed down enough that they're able to construct meaningful sentences.


I'm glad if I can get people to just write to me and say "Good show." (Thanks Walt, aka "DasGimp" out in Everett WA. and Sean of "The Detonators" right here in Joysey :-)


But my earlier point about what it takes, how hard it is, to reach all of you listeners is a valid one.

As a society we shield ourselves in layers of paranoia and disconnect from one another in order to protect a concept we can scarcely define: Privacy.

It would all be so much more efficient if we could all just keep our IDs in some central networked MS registry.

But we didn't even have the technology until after the turn of the millenium and we've all grown up in an un-networked world.

So we're here, having to suffer, sometimes terribly alone, while people who want to help us are forced to wonder who we are and where we are.

The raison d'etre of this podcast is to be a meeting ground for those people trying to help and those who could use the help.

I'm not altruistic to the point of abnegation. I hope to do well as I do good.

But if I can keep someone of Josh Jacobson's of the JustJoshing Podcast's age from going through what I've gone through, the self-denial, the diagnosis, the recovery, the relapse, the partial recovery, the self-doubts, the self-recrimination, I'll consider that I've secured a place in a heaven I neither believe in or need.

God, if you exist, and if you're listening: "I'm doing all right; no doubt better than could be expected under the circumstances."

Here's what I've learned in all these years: The best way to predict the future is to invent it.

Its not something I can take credit for. Alan Kay wrote that some years ago about something completely different, but its the truest statement I know.

My future's so bright I gotta wear shades.

Now lets get out there and invent a cure for MS.


I will be taking my voice off the wire and letting somebody else handle the show's reins, because you need to hear the message even more than I need to speak it. (Though it was fun and quite cathartic to do.)

But I am not the person to read you the MS news.

While I no longer speak well enough to be in podcasting, I do write well enough to script some of the episodes.

I know I can run things behind the scenes but the voice of MS needs to be healthy, clear, intelligible, and, for historical and psychological reasons, probably have a female range and tone.

Part of the purpose of starting this podcast was proving that it could find its intended audience. And it has. About 750 downloaded an episode, and the audience for the past three episode has been over a hundred, and all without any promotion.

You came looking for this information, and for most of you, in the unlikeliest place: iTunes.

Another part of the purpose was to prove that it could save advertiser's money and provide them with a wide range of options for advertising and marketing as part of an integrated marketing strategy and to do it all at a lower cost to them. It can save them that in stamps alone.

We MSers now have a viable channel to communicate with each other and with the various companies who manufacture drugs and other things, provide services and do a whole lot more, and they now have a channel to communicate with us.

I am on the look out for somebody who can read the news in such a way that its understandable and pleasant to listen to.

This implies being 'plugged into' the National MS Society and able to relate to people.

I'm opening the mikes to a contest for the Voice of MS. This is open to anybody who has MS and who can get to my recording studio/home-office in Jersey City, New Jersey, on a regular basis.

Get your entries in, call me at 718-813-6111 to record in person, via email and I'm working on getting Skype voice mail (skype name: msbpodcast) to work on this machine.

The first place is a paying job reading the news of MS and playing some podsafe tunes.

It will take at least an hour of air time a week and pay about $400 a month, plus you will be paid for reading for special events and/or doing voice-over ads.

You've got a voice; MSers now have a voice; lets combine the two.

That's enough for this week...

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