Thursday, April 20, 2006

msb-0013 Tragically Hip. That's me.

Well, as you can tell by the "smooth as silk" intro, GrooveIT by Denis Kitchen off of the Podsafe Music Network, people are starting to get back to me about this MS 'specialty' podcasting (and my mesage hasn't even appeared in New Jersey's MS Connections yet. :-)

It makes perfect sense that the pharma co.s would get back to me, since it so much cheaper to advertise on this tightly focused podcast than trying to use the mail, at great expense, to send stuff to one person at one time, and to send stuff only once.

Podcasts are great because they cost so littler; like 160 times less.

And that's just the beginning.

Lets talk reality now.

A pharma co can develop the greatest cure for MS in the world, but if nobody with MS ever hears about it, they have wasted all their time, money, blood, sweat and tears. (Though I suspect the blood was provided by the Guiney-pi, pi, pi..., MSers during the drug trials.)

People only hear about any product once when they have a diagnosed exacerbation. Sadly, if you've just been diagnosed with MS, you're not into making any decisions, for any reason.

The people who need to make those decisions are the same people who are in moderate to heavy denial about their diagnosis.

Its not fun to be diagnosed with MS and it really isn't fun getting sick enough to require the diagnosis.

They pretend that its not happening or that its all going to go away, like a bad dream or a nightmare. They'll wake up real soon now and it'll all be over.

They are not going to be in the most receptive frame of mind.

I know a few people with MS and its rare to be clear-headed about this, or any other, life-altering disease.

Lke it not, MS is a life-altering disease.

It has put me throught many changes I would have rather have done without, and those have happened mainly since 1996.

Before then, I could pretend that I was strong and fit. (I just couldn't write worth a crap, but I could type like a demon. Good thing I was a programmer and have since gone on to project management.)

Since then, the effects of the disease won't be denied, though I still do it. (And I blame my unnaturally sunny disposition on MS [How's that for irony.])

Back to the topic:

Why do we want this, uh, news from the pharma pulpit?

Hey, we were just walking on the sidewalk when we got run over by a bus called MS.

I want to hear about any damn thing that will stop or better yet reverse the damage and get me walking normally again. I'm not even asking to play guitar or to dance again, though that would be luverly.

I'm asking for the same kind of news from rehab clinics, most of whom don't know about MS and keep trying stuff for people who'd been hit by real busses but only their meat got mashed instead of their nerves.

My healing is drastically different from the average patient they see and my limits are drastically different from the average patient they see.

MS has taken wire strippers to my nervous system.

The rest of me is healthy as a friggin' horse.

I'm muscular, fit, a slender 170, to the point where I have trouble finding fat spots to inject myself with Rebif.

Its not that I didn't want to show improvement or that I'm in any way weak muscularly, its that MS has taken wire strippers to my nervous system.

I no longer have any fine motor control. I can no longer make grand sweeping gestures (Not without knocking something over anyway. :-)

Man, I'm all over the map today. Back to the topic:

And what do we want to tell them about their injectables? (Like: Can't you come up with a inhaler like the asthma medecines use and stop making me squirm just thinking about taking my meds. Besides, injections are ways for getting hepatitis A, B and C. )

Well, you can't make any kind of progress if you can't get any fedback about why people aren't taking your pharmaceutical products or following your rehab regimen, (and people who aren't taking your product, or following your rehab regimen aren't going to bother telling you about why they aren't taking your product.

That is why I have an anonymous survey form you could/should/would be filling out on the page.

The questionaire processing and statistics gathering are actually quite quite scientific. I took statistics in school and I can report that it really going to provide them with statistically significant data, and that I can (and will) tailor the questionaires to fill in any statistical points that are required.

Of course, its still anonymous and its still optional.

And I can get feedback of all kinds through email ( ) or through skype ( skype:MSBPodcast?call )

Well, at last "School's out" ... And that would be just a perfect song for the occasion. Hmmm. Maybe I'll bug Vincent Furnier (aka Alice Cooper) for permission to revive that song next. Nah, let him enjoy his golf game in peace.

MCNY is trying but they also just don't get what its like being a disabled older student.

And I'm not going to be the one to teach them.

Their rules, procedures and bureaucracy (read trite tripe and BS) just aren't worth fighting with them about or putting up with at any age, never mind at my age.

I don't have the energy, the time or the inclination to drag their part of the American educational system out of the late Eighteenth Century. Before there even were typewriters.

They can take their Bachelor's degree, make a pointy little dunce cap out of it, pluck a quill off a duck's ass and stick it.

I don't need the piece of paper and I have many more important things to devote my time, energy, remaining strength and the rest of my life to; like this podcast.

So I'm taking the Associate's degree in Business, walking out and never going back.

School's really out for me.

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