The West Wing last night (5 January 2005)

by Michael S. Kaplan, published on 2005/01/06 03:26 -05:00, original URI:

The West Wing was interesting last night and much more topical for me as Jed Bartlett described my biggest (well, most visible) symptom without naming it -- disequilbrium. Looking it up on finds the following definition:

Loss or lack of stability or equilibrium.

But that doesn't cover it for me, since obviously that works for dizziness/vertigo too, which this is most decidely not.

I do have to say that I like what they have been doing on The West Wing with the MS this year. They take some liberties for the sake of drama but its a pretty balanced account on the whole. And a lot of it feels accurate, which helps. And makes me wonder who is advising them....

Anyway, back to Martin Sheen and what he said about disequilibrium:

Bartlett: I can't stand up any more.

Wilkinson: Sir?

Bartlett: I've lost my balance. It should come back, but it's gone right now.

Wilkinson: Are you dizzy, sir?

Bartlett: No, I just can't find my balance. It went away. I try thinking it back, but it's difficult because it's not a static thing. Once it's gone, it's hard to imagine having it back again. It's disheartening to realize that thinking just isn't going to get it done. You've just got to trust that you'll happen on to it again.

That is what it is like.

I'd add to it that I do not feel like I am falling when it happens, I just fall. Or maybe it is like the ground just getting a little too friendly, coming up on me like a drunken sailor out of nowhere. After having felt both vertigo and this in my life, I'd have to say a non-puking form of vertigo is better, because then you get more warning. Its unpleasantly like being drunk1.

I probably fall most at home and nearby home (certainly all of my falls down stairs were due to me living on the third floor). And usually no one ever sees it. I think, in fact, that I can name every time that someone has witnessed me falling -- less than 20 times in the last eight years. Despite having probably thousands of falls in my past. The ones that were witnessed just kind of stand out, much moreso than the ones that were not.

I have had people tell me (when they do so me fall) like it was almost comical, as if I was falling in slow motion or something. I like to think of it as me being almost "the one" like Neo -- so I do not have quite the power to stop the bullets, but I can almost do stuff like that. At least I can almost stay upright. Maybe if I knew kung fu....

But I live on the first floor now and do not do as much walking around, so I am falling much less (just due to the lack of opportunity if nothing else). I don't need to try and trust that I will happen on my balance again, though I probably will for the times that I do walk.


1 - You may not think that is unpleasant, but if so then you have probably never, as Douglas Adams indicated, been a glass of water.


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# David Smith on 6 Jan 2005 5:33 AM:

Interesting post. I'm a junior at college, and my roommate came down with MS in my sophomore year. It was an enlightening experience to say the least. It started with simple stuff, but got increasingly worse, until he couldn't do anything anymore. He got medication, once they diagnosed it, and the turn-around was astounding. In a couple days, he seemed back to normal.

I thought your description seemed to describe the symptoms of my roommate closely; atleast the quick onset of the symptoms anyways. Though he described his feelings as simply a loss of control of muscles.

When did your disequilbrium begin?

# Michael Kaplan on 6 Jan 2005 8:10 AM:

The disequilibrium was not my first symptom, it was not until a few years in. Say about eight years ago. It actually made me get a cane before I needed one due to the natural tendency of people to feel like folks who fall in the middle of the day must be drunks. :-(

One of the problems of a disease that affects both the brain and the pathways between it and the body, symptoms can affect almost anything.

The relapsing/remitting qualities do make it very weird as a disease. They probably did a burst of corticosteroids for your roommate to have a fast reaction like that. Its a good sign when they work since it means that symptoms are based on inflammation rather than on long-term damage....

In any case, tell him that I've been there (diagnosed at 20), and they can pop by here some time if they are interested.

I'd probably show up at a Michigan State .NET User Group meeting (or even speak at one if you were interested) if it was only located in the right part of the country! :-)

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