Monday, November 12, 2012

An M.S. in MS

I know nothing about MS. Really.  If you're looking for wise counsel on this pain in the butt (and other places) neurological nightmare,  there are other places.  I am a total dolt.

Ah, this means you must have new doctors, Tom.  Or you're starting over.  Let's go with the latter.  One of the more popular posts here is the Mr.T one from the early days.  And in there I talked about pain and trying to deal with it day to day.  My primary physician is in reality a Doctor of Orthopedics.  She was the one who could literally pick me up and adjust me like a Rubik's Cube, and she suggested some exercises that might limit the amount of pain coming from my lower back, which I'm guessing comes from muscles tightening and the oddball walking stance I and numerous of my MS cohorts have.  Yes, it looks like we're drunk sometimes when we stroll down the boulevard, and I've never drunk enough alcohol in one night to see if I could balance it out.

 
Actually this is a picture of me walking around my office, back when I had hair and great taste in ties, and just coming back from a meeting with my Commissioner.  But you get the idea.  So anyway my Primary recommends Physical Therapy.  So back I was at Seton Health in Clifton Park for Therapy, exactly one year after I had started it the first time.
 
 
And this is pretty much what happened.  The conversation was pretty much the same as a year ago, except with a different therapist (my usual one off on maternity leave).  And this is where the perpetual education of MS appears again.  Here was someone who actually looked at my legs, picked them up, moved them around, really observed what was going on and then told me.
 
"Actually, your right leg is getting weaker than your left." 
 
She demonstrated this in how high I could lift my right leg, the ability to swing it back and forth, and in general range of motion.  I had thought from day one my left was weaker, because, well, that was what I was told by a person sitting across a desk from me.  Those people in the white coats, you know them?  OK, no rant.  But the physical therapist spent more time with me in that one visit than a trio of doctors had in the last month put together (not counting my psychologist because the 55 minutes are paid for already - but she's been incredibly helpful).
 
Sleep has been difficult since we returned from Disney, and the therapist and I talked out some thing we're going to try.  It's pain and brain, so exercises and making sure the drugs are in order will be the script there.  Put a pillow between my legs, bolster my back, and try not to snore in my wife's face.  We're still working on this, but you can get a lot of writing done at 2:30 a.m.
 
Also we're back in the pool again for Water Therapy! Woo-hoo!  I really enjoy the warmth of the water, and the camaraderie there.  I also enjoy standing with little pain, walking, moving in relative comfort.  Happy to do the exercises.  This week I'm going to do the "land" exercises just before driving down to Clifton Park, doing this.....
 

 





 
 
 
and then try the "land" exercises again, and see if there is even a smidgen of difference.  I can raise my arms directly over my head, but that's it, no longer any further back.  The legs are not going up as high as before, like the right leg, see.  Maybe all this will help, maybe not.  The muscle deterioration will continue and I'm at best slowing down the attack, not quite repelling the army.
 
But my allies, not the so-called big ones, but the small ones, the Belgiums of the MS battalions, continue the fight to ease pain, and keep me in the fight.  MS is battling ME.  Fight well, my friends.  Keep learning.  And never assume those people behind the desk know anything.
 
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A little side note.  Last week I gave my second memoir reading at the Troy Arts Center with a gathering of other writers on The Holidays.  The event was a great outlet for creativity and it kept me primed (read: manic) for a few days.  But all the stories were well received, and it's nice to be on stage (show biz!) again.  I'll post the Holiday story sometime next month.
 
I do have a M.S. degree, by the way.  A Masters in Public Administration.  Multiple Sclerosis was not impressed with this piece of information.  The diploma sits in a drawer someplace.  As long as I have co-pay ready, I'm welcomed anywhere.
 
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