Strange oddities in my right hand -- weakness, lack of coordination, stiffness, all non-responsive to physical therapy -- were the first signs of ALS. They remain my major symptoms, and are getting worse week by week.
Of course, compared with someone in advanced stages of ALS, I am still doing very well. Compared with a lot of people with a lot of afflictions, I am doing well. Compared with how I was just a few months ago, however, I'm pretty piss-poor lousy. And frustrated. And scared about what is to come.
I mean, if I am so frustrated and helpless-feeling now just because I need help with the pepper grinder or tiny buttons, because I have to choose carefully from a restaurant menu to order something that I can get from the plate to my mouth without looking/feeling like a dork, because I keep getting my hair cut shorter and shorter 'cause I can no longer style it... well, what am I going to do when things really get bad? Is this the correct attitude of one who runs until tackled?
Correct, schmorect.
If I am going to be true to my purpose in writing this blog, I don't want to run my words through the filter of "should" or "want to," but just discuss, as truthfully as I can, my progression, responses and feelings.
So... I feel piss-poor lousy and frustrated.
I can't button my blouse. I can't button my jeans. I can't cut my own steak. I can't open a jar. I can't hook my watch. Hooking my bra drives me crazy. I type with my left hand (and sometimes my right forefinger). I comb my hair with my left hand. I try to put on makeup with my left hand. I try to paint with my left hand.
With my right hand, I can grip a steering wheel or a gearshift. I can carry my purse or shopping bag by the handle. I can still shake hands without that disgusting dead fish effect. I can still write, but my four-year-old granddaughter has better, far more legible penmanship.
The most bothersome aspect is that I just have to think so damned much, I have to plan the simplest things in advance: Put the keys in your left pocket only. Button your shirt, front and cuffs, before putting it on like a pullover. Are you going to pick that thing up with the left hand or right? Once you pick it up, can you carry it? Once you carry it, can you put it down?
Once you start complaining, can you wind it down?
Yes....
