Megaphones and Post-It Notes
When I was diagnosed in 2000 I chose to dive in and devour every piece of information I could about Multiple Sclerosis. After a while I went the other way and chose to ignore everything about MS. This happened to coincide with my having to give up interferon treatment. Well as you can probably tell the pendulum has swung back to probably a more healthy balance of information and participation.
I thought I would highlight a few people’s blogs out there that are using the internet to get the message out there about MS. These are the types of people I like to associate with as they do not dwell on the negative, and they use the awesome power and technology of the net to educate, and create community, with others. Now I might not agree with all they say, but I will defend to the death their right to say it. So the usual the blogs featured do not represent the views of NetXperiment yadda yadda.
The first is Charles-A Rovira’s podblogcast which can be found here .
Charles talks about MS stuff in a candid and opinionated manner on the blog, but I would recommend you download and listen to his podcasts if you like your information multimedia style 
Here’s his podcast page link
Charles-A. Rovira wrote:
Hello Allison,
the podcast stuff is easiest to access at http://www.MSBPodcast.com/
I’m not the only contributor.
There is also a fellow MSer who goes by the handle MDMHvonPA. His blog is at http://mdmhvonpa.blogspot.com/
My writing stuff is at http://multiplesclerosisblog.blogspot.com/ but it only got my stuff in it.
I’m a techie (program and design since 1976, Smalltalker since 1986 and IT project manager since 2002) who happens to be an ex-musician an exer-architecture student.
I’m no spring chicken (And if you hear my show, specially if you catch up with the older episodes, I DO reveal a great deal [I’ve stopped lying to myself and trying to live in denial {Which is a BIG problem with MS.}.].)
You might also mention that I’m in the iTunes Music Store at http://phobos.apple.com/WebObjects/MZStore.woa/wa/viewPodcast?id=120932170
And tonight I was in Mark Yashimoto Nemcoff’s spot on Sirius Stars 102 “Pacific Coast Hellway” (I won the bidding for the ‘Be A DJ For A Day’ contest and I was glad to have it.
And you’re right. Charity begins at 127.0.0.1 (That’s ‘home’ for all of the non techies out there.
Posted on 03-Jan-07 at 4:57 am | Permalink
Charles-A. Rovira wrote:
This is a duplicate of a reply I posted to you on my blog.
Hello Allison,
I’m not sure what the problem with my email might be. I’m certainly getting my daily dose of spam.
The NetXperiment seems to be a great venture. Are you tallying up the money you raise in Australian dollars? (Or Canadian? [Or US? {Or what? :-} :-]
Its ambitious but you seem to be up to the task.
We’re approaching the same problem (MS) from two directions only to meet in the middle*.
I’m coming at it from the abandonment of MSers because of their demographic scarcity.
Only 1 person in 1,200 gets MS outside of the tropics.
That’s not enough people or money to capture the attention of traditional media.
There is also a big problem with MS and other episodic diseases: D-E-N-I-A-L !
Part of the problem is the messages that people get from traditional media.
They always present the direst scenarios to pull at the fund raisers heart(purse) strings.
No sane human being can relate to that sort of message, not if they want to stay sane anyway.
Nobody can project themselves in those situations so denial is the only choice.
The only coverage that diseases get is either too scientific (too much obtuse jargon) or too fatalistic (you’re going to be in a great deal of pain, and then you die.)
I’ve put my show together to combat that tendency and to provide a twice weekly medium for advertisers to get their word out as to what is available for people to help themselves.
MSBPodcast is my line in the sand to keep channels of communications open to all MSers without depressing them, upsetting them or scaring them.
It shows that MSers can do thing rather than just lie there and wait to die.
I’ve had MS since the late 60s (when I had a episode but I didn’t know what had happened, so I recovered,) again in the mid 80s (when I was diagnosed and handed a grim prognosis, but I fully recovered,) and again in the late 90s (when I started to use a cane.)
Ignorance for fifteen years and denial for another fifteen years led me to a preventable third episode.
Well I’m not denying it anymore. I can’t. I now walk with a cane. (But I did paint it red.
* Given the fact that you’re in New South Wales in Australia and I’m in New Jersey in the USA, the middle is in the Pacific, a very wet place, or in the Sahel which is a very dry place.
Posted on 03-Jan-07 at 6:40 am | Permalink