EDSS smackdown

That score that we MS’ers are constantly keeping track of ourselves with has dealt me a low blow.  I wasn’t prepared to have my new neuro at USF lay me out with such a number, but apparently I earned it, fair and square, with my declining walking ability.  My last Canadian score was 3.5, which I thought was degrading enough, but 6?  Seriously?  

Yeah, I admit that I can trip over painted lines on the pavement.  Even standing at a crosswalk can have me wavering, but that is just because of the fast moving traffic zipping past me.  It must be the sharp slap of air rushing past me that causes the wobble.  Lately, I have noted that I’ll stand with my feet every so slightly further apart these days, perhaps to maintain steadiness in the face of a hectic world.  

This doesn’t mean that I’m unsteady, just that I’m more aware of the potential to become unsteady!  Isn’t there an old saying about prevention being worth a pound of cure?  All I’m doing is emphasizing the prevention, since a cure isn’t even in the ballpark!  

As always, I was completely honest and upfront with the doctor.  What is the point of putting a pretty face on an ugly mug?  I’m honest with myself, in acknowledging the losses I have sensed since we moved down here to the sunshine state.  I even asked him if he thought that I might be heading into secondary progressive MS, that toll that every RRMS shudders to hear.  He shrugged, and said The myriad falls were just the start of the slope, but now I am having to be even more cognizant of potential hazards.  

Since drinking a large quantity of water is a MUST with MS, I am a devotee of the ice maker on our kitchen fridge.  Never would I utter a criticism of its function, at least not in public.  But between you and me, dear blog, it occasionally suffers from ah, incontinence.  That is, it sometimes doesn’t stop releasing crushed ice the moment you stop pressing the button.  Sometimes a few crumbs of ice cubes land on the ledge, other times a dozen or more of the crystal crunchers will topple on to the floor, creating a potential slip-hazard on the ceramic tile.  That reminds me, I must go and sop up the puddle that has undoubtedly formed as a result of the latest overstatement on the part of the ice maker!  

A quick glance at the calendar tells me that we will be flying out of SFO in just 3 weeks time, heading for Toronto’s Pearson Airport.  From there we must scurry to get our rental car, and head off to Kincardine, approximately a two hour drive.  Since we will arrive at Pearson at about 7pm EST, we will theoretically still be operating on Pacific time, making it late afternoon to us.  We mustn’t discount the exhaustive effects of a six hour plane trip, so I’ll probably be wiped out anyway.  Thank goodness I’ve got Glenn to guide the way, as I have great doubts about my own abilities these days.

 

 

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2 thoughts on “EDSS smackdown

  1. I’m so sorry, Leann, to hear the new Dr.’s score for your EDSS. I was shocked too! I was thinking though, maybe he gave you a higher score so he could get you onto his drug trial?

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  2. I’m already on the Gilenia trial, and he’s quite happy to leave me there. He did explain that my number was as high as it was because of two things: MY descriptions of the troubles I’ve had with falling, and Glenn’s input (he stayed with me, my choice). Dr Goodin did comment about me showing up for his presentation on a different medication, and how taken aback he was! To know me is to get used to me!

    I’m home today, as I called in sick to my volunteer job at the Senior’s Center. I got ZERO sleep last night, for some reason. One thing that is worrying me a bit, in the back of my mind, is why Glenn is being SO NICE all of a sudden! I mean, he’s always sweet and understanding, but he is actually volunteering to do stuff for me! This is a change from a week ago, and my paranoid self wonders what is going on with him! For example, I made muffins last evening, but they weren’t done as soon as I’d hoped. He sent me off to bed at 1030pm, and stayed up til they were done, AND washed the dishes for me! Like I said, PARANOID!

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