Monday, January 23, 2006

msb-0001 Hello and Welcome

Hello all.

I am blogging and podcasting (sorry but that what I really sound like,) because this is a great way to get the word out that, while tragic, MS is not the end of the world.

And also to fill our ears with cool podsafe sounds.

Here's a little about me, my setup, my mission, and your chance to send me emails and voice mail to get your voice heard.

Since this not a broadcast, FCC restrictions don't apply. If something really pisses you off, if you have something less than complimentary to say about somebody or something in your life, go ahead; vent. (I've been screwed over myself and I'll be getting even...)

But enough about you. Its my platform for now.

I've had MS since I was 16.

I didn't recognize it as such but my handwriting went to hell. I' d never even heard of multiple sclerosis but that didn't mean I didn't have it. A couple of tremors while sitting in Mr. Miller's history class and all the work the nuns had done to teach me how to write went to Hell. 1969 was a portent of my entire life.

MS didn't bother me again for years. I'd learned to play guitar, got good, got real good, got to play play at the Yellow Door Coffee House in Montreal, Quebec, Canada, in a room full of other guitarists and their girlfriends, the staff who'd heard it all all before, and I noticed that you could have heard a fly fart. I was playing Fantasia in D minor by Silvius Leopold Weiss and I was playing it great. Not just good, but great.

I got a feeling that I was done with all that, gave away my guitar and got into computers in an odd way.

A little supersilious shit of a human being named Krishna at the math lab at Dawson College, Montreal, Quebec, Canada, once saw me looking at a Wang 2200 computer and said: Oh that's a computer. You wouldn't understand.

He tried to imply that, while he was bright enough, he didn't think I was.

Well screw that. I respond to intimidation by doing exactly the opposite of whatever reaction was intended. I was going to learn everything about computers. And so I did.

By 1976, I got married, found computers fascinating, obsessively so, and since have got to work with lots of interesting people, travel all over North America, Lisbon, Portugal, and got really, really good at my job.

I was 31, living and working in Ottawa, Ontario, Canada when, in 1985, after a few minor and undiagnosable exacerbations, I had a major attack. That's when I was diagnosed.

While lying there, unable to even pronounce the letter A, and getting bored out of my mind, I decided to think about object-oriented programming. You think real deep thoughts when you don't have any disturbances to bother you, like a body or an appetite or anything.

After I left the Ottawa General Hospital after five weeks, including a week in neuro-ICU, and had rehab, I just kept improving until there were no symptoms left. Life was good. I was writing articles, and getting them published, travelling again, working again and earning again.

In 1995, I finally ended up in Staten Island, then in Brooklyn, then in Manhattan in New York City, New York, USA, got divorced, got remarried, got one job after another, when in 1996, at the ripe old age of 45, I got another major attack.

I re-discovered that you do think deep thoughts when you don't have any disturbances to bother you, like a body or an appetite or anything.

This time it was about objects, instances, relationships and connections. (That's the subject of another blog [] and podcast [].)

I walk with a cane now, slowly too, so my mobility is definitely impaired, as is my speech. It takes some cohones to host a podcast when you speak like I do. Well, I got cohones.

I lived through 9/11. I was living literally next door at the Gateway Plaza in Battery Park City, New York City, New York, USA when Osama bin Laden tore a hole in my sky. My commute used to be a thousand feet forward and a thousand feet up. That was gone. Utterly gone.

I ended up across the Hudson river in Jersey City, New Jersey, USA.

After a year or so, I got my head straight and my views adjusted and I found another job. (Being good at what I do really, really helps.)

I was still a nut-job, but I never let that handicap stop me. I went back to fill in some gaps in my education.

I was going to school for a Bachelor's Degree in Business when I discovered podcasting.

I heard "On A Podcast" by Cruisebox and I did what I usually do; obsessively research and learn more about it than a human being normally would, plotted and planned, bought equipment, software and hardware, came up with a concept which would help me get the word out there, wrote some scripts for my other obsession: objects, instances, relationships and connections. "Big deal", you say.

At an annual convention of the New York Chapter of the Multiple Sclerosis Society, after a fascinating presentation and a couple of uninteded appointements with my doctors, I created this podcast.

For my equipment, I use a couple of Macs, a couple of microphones, GarageBand, Podcast Maker, and

I haven't quit my day job yet, but now I do podcasting for fun and potentially for profit.

My mission is to spread the word about MS, about Rebif (which I use,) and about any other products out there which could help people cope with MS. Another mission is to spread the word of other people with MS and people who care for or about other people with MS.

I still have it. MS is like ugly luggage; you can't give it away. It's not going away and neither am I.

I am going to have music and MS news and I'd love to hear from you.

I'll be interviewing people I meet who have MS, people who are coping with MS, people who are thriving despite MS.

And I want to meet their sigificant others; the ones that put up with all their pains.

I want to meet women and men who felt shattered by the news but are getting over it, like I was and like I did.

I also want to podcast interviews with the mover and shakers in this world of MS diagnosis, MS treatment and possible cure for the diferent types of MS.

I have remitting relapsing MS. That's my tough and its good for me too. There are some people out there who have something like a degenerative MS.

I am also concerned that the precursors of MS are being ignored just like I ignored my very first attack, in Mr. Miller's history class.

MS used to be thought to be an adult-onset disease; striking down those between 25 and 25.

I thought I was weird when I cast my mind back to Mr. Miller's history class. Now I'm not so sure that it I was. I've been hearing about other young people getting MS. I've been reading about other people remembering their own precursor events.

Maybe its an adolescent onset disease... Something that happens during puberty, when our bodies are changing redically.

I think that its great what the doctors are doing with treatment and their other research, but I think that this adolescent-onset area also needs some research. I want to hear your stories.

Also, are there any sponsors interested out there? (I will be getting in touch with the MS Society, the drug companies and anyone else I can get to hear of or otherwise know.

Give a shout out or send me en email (

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