Tuesday, November 28, 2006

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.


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.


Miss Chris said...

If I hadn't had my computer after my diagnosis, I wouldn't know nearly what I do now about this illness.

mdmhvonpa said...

Bureaucrats are so inefficient.

Heh ... it think that efficiency is kryptonite to Bureaucrats.

mouse said...

Charles, I'm with you on the beneficial aspects of being connected when it comes to those of us with disabilities. It renders one a sense of ability. Sorry, but I can't do the podcast thing because I don't know how to hook up these speakers that my hubby left me with. But I will get the matter solved one day in the hopefully not too distant future. I'm old enough to remember Rowdy Yates and Rawhide! That probably makes you a youngun. But when it comes to tech, I'm a newbie!

Charles-A. Rovira said...

Sorry to be late in posting and replying but I was a Tai Chi. Darn thing worked again. :-)

Hello Miss Chris, as my wife is fond of saying: "the internet knows all."

Hello MDMHvonPA, bureaucrats are cought up in a systemantic bind that blinds them to the obvious. (It not just blinkered, Philistine, pig-ignorance. Though that helps...)

Hello Mouse, I certainly do remember "Keep them dogies movin', Rawhide! <yah>". (I'm 53 so I'm definitely NOT a young'un, but I just graduated from college so I'm not old yet. :-)

ByTheWay, the speakers probably are powered speakers so they need an electrical outlet (if I have to explain a power plug and a wall socket to you, you can't have typed the message I'm responding to :-) and after that the hookup to the computer is probably a wire with a green plug that is looking for a green socket on the computer.

Of course, I could be wrong, but that's been the normal configuration for all PCs since 1995.

Jaime said...

I think it is a great idea to provide everyone who has an disability such as MS and wants one with a laptop. They are compact and easy to use. After working for so many years, my computers have become a lifesaver for me. I would go nuts without them.