Carnival of MS Bloggers #140

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Fluttering; synchronicity

from Robert at The Gifts of MS

Well, "relapsing/remitting" is one thing, but "fluttering" is another.

There's This Day, just a day like any other, except... my air-quotes "walking" is better. I use the self-propelled wheelchair briefly as a walker (hint to others who might want to try this with their wheelchairs: be sure to lock the wheels. Then, it's just an oddly-shaped walker. With the locks off, it's a face-planter) and things work... not so bad! Not bad at all! I think, is my "walking" getting... better?

Cut to This Other Day, just a day like any other except... my air-quotes "walking" is worse. BANG, it's worse. No creeping-slow-gradual-is-this-maybe-better improvement, it's BANG worse. Fortunately, that's a metaphorical bang, although I've felt that almost any second I was going to hit the ground, it hasn't happened yet. "Yet" is precisely what I'm hoping won't happen, but you never know...

And these changes are day-to-day. Last night was bad, this morning isn't quite as bad, but it's also not quite as good as it has been, sometimes. And this isn't what I think is a relapse/remit pattern, and I'm only guessing because that's never been my experience of The Disease, it's not a multi-day or multi-week vastly better/vastly worse vacillation... It's "Dang, today's better!" followed by "Dang, today's worse!" No rhyme or reason, no "Gee, I did [x] and things worsened, I did [y] and things improved," no visible pattern of causation. Just ... fluttering.

Well, that's life. Some days better, some days worse. Us M.S.ers, we just notice it more than we used to; we think it's happening to us because of The Disease, but it's really just the noticing that's due to The Disease. "Noticing" more clearly is also a side effect of meditation, especially zazen meditation, which is a hard path but one that I'd recommend more enthusiastically than The Disease. Involves fewer M.R.I.s, for one thing.

And a cute pice of synchronicity: A friend of mine sent me a news clip, there's a study going on at the Mayo clinic involving just aspirin! Three groups, one gets placebo, one gets "baby aspirin" dosage, one gets the equivalent of four tablets a day. Well, I don't qualify (I don't have the right "kind" of M.S., I can't do a couple of other things they want someone to be able to do), but I seem already to be on the "some aspirin a day" path, thank you very much musculo-skeletal headaches, and thank you very much Excedrine for putting my favorite brand back on the market because those (for me) have always been better than pretty much anything else I've tried.

So, I'm not being "studied" (as such, at least by the Mayo Clinic), but I'm workin' the same study, kind of, by being between the "high" and "baby aspirin" dosages.

Doesn't really mean anything, statistically speaking, but it does cure my headaches. And really, what part of "makes me feel better" is a bad idea? Well, presuming it causes no "stealth" harm... feeling better is a good idea. Isn't it?

Well, I think so. Besides, thanks to sensitivity gifted us by The Disease, I'm sure I could tell whether I had an active or placebo dosage, which eats into the "blind" part of "double blind" studies. Which means I wouldn't help them, they wouldn't help me. So, I'm staying home and taking my aspirin and wacko Chinese herbs.

And for all of us who navigate the waters of The Disease... how often do we get to say "That's fine by me" and smile?

Well then, let's do it:

That's fine by me!

This concludes the 140th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on May 16, 2013. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, May 14, 2013.

Comments for this post.

Carnial of MS Bloggers #139

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Proprioception and Balance

from Sunshine at Needle Fatigue

“I look up, I look down…”

There are many MS symptoms that will not respond well to medical treatment; in short, you’re pretty much stuck with them.  Dizziness — my #1 symptom — is one of them, and so is paresthesia (numbness in the hands, in my case) and other forms of dysthesia (distortion of the senses).  One of the oddest things I’ve dealt with is the latter, in particular a distortion of proprioception, which is basically how you know where you are in a given space.  Ask my husband how many times I bang into doorways, with my glasses on.  And this is also why I am almost never without my walking stick for any great distances; if the dizziness won’t get me, the Weirdness (as I refer to that sense that I’ve suddenly stepped into another, vaguely syrupy dimension) will.  But I will say something positive here: although most forms of dysthesia may be out of your control, if you have proprioceptive issues, it is totally worth looking into balance therapy.

Sometime after that summer 2011 relapse, the neurologist suggested I give balance therapy a try.  Why?  Because it wouldn’t hurt.  (It was a good thing I had good insurance.)  But I was surprised that I really did derive some good effects from it, and I’ve just reminded myself of this lately.  The exercises the therapist gave me, I will now share for free.

The first exercise is pretty odd.  But it works.  And it may also improve your ability to read in a moving vehicle!  Take a business card or anything of that size with at least three sizes of font on it.  Tape it to a blank wall.  Now, keeping your eyes focused on the largest font, move your head from side to side, reading that text, for 2 minutes.  (Your head moves but your eyes do not).  No more than 2 minutes, but no less.  Do this three times a day if you can, for a few days, then graduate to the smaller font.  After a week, tape that business card to a wall with some kind of pattern (I used a map, but wallpaper should work).  Do the same thing.  Keep this up for a couple weeks before you start the next exercise.

Exercise No. 2 seems a little more normal.  But not much.  Stand in a corner so that you are protected from a fall on both right and left sides.  (You can put your arms out to the sides to catch you just in case.  If you have someone living with you I would enlist their help too, at first…)  Put your right foot in front of your left one (heel to toe).  Close your eyes.  Stand there for 2 minutes.  You will feel like you’re definitely going to fall.  But the important thing about this exercise is it’s a test of will power.  Say to yourself “I am standing perfectly still; I am not moving and I am not going to fall over.”  You’ll feel your calf muscles go nuts with the strain of keeping you upright, and in the beginning you will catch yourself falling.  Your brain is convinced that you’re teetering on some precipice somewhere.  But you know better.  You say “No, brain, I’m perfectly graceful standing here looking like a Degas ballerina.  I refuse to fall.”  Or something like that.  (If you are a man, please forgive me; I have no idea what the masculine analog of a Degas ballerina might be.)  Now do the same thing with the left foot in front of the right.  You will fail miserably in the beginning.  But with time, you will have a smug smile on your face when the 2 minute timer goes off and you haven’t wavered in the slightest.

Exercise No. 3 always reminds me of Alfred Hitchcock’s Vertigo.  In your corner, keep your eyes open.  Cross your feet just as you did in the last exercise, but keep your eyes open.  Now look up.  Look down.  Look up.  Look down.  Now look to the right side.  Look to the left.  Look right.  Look left.  Follow with your eyes as you go.  Do this for 2 minutes.  And yes, according to my therapist, 2 minutes has been scientifically verified as both the minimum and the maximum length of time to do all of these exercises.

I hope these are helpful for my fellow meanderers and weavers.  If nothing else, I just saved you a few hundred bucks and several hours at the physical therapist’s!


This concludes the 139th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on May 2, 2013. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, April 30, 2013.

Comments for this post.