Jazz Hands

The ironic thing about having a progressive, neurologic disability is that I often find myself wanting to do things I never did before.  For some reason, I want to play the piano or any stringed instrument.  My hands look as though they were made to play an instrument.  The problems—no prior interest, no musical aptitude, and an ongoing loss of manual dexterity.  Go figure. 

Fortunately, I have full function of my hands and strength, but definitely lack the control and fine motor precision I used to have.  I blogged about it four years ago, but I viewed the bigger deficit to be more visual than manual*.  Hand tremor isn't an issue most of the time, but hand–eye coordination is.

I wish I could find the humor in it, but I can't always.  Lack of coordination is often the first and most noticeable sign of ataxia, but it can feel like clumsiness.  I sometimes find it hard to take it in stride.  It's worse if I try harder and will often avoid struggling in front of someone who wants badly to help.  It's just too aggravating for both of us.

I have to be careful and deliberate when handling things because visual perception of my hand position isn't always accurate.

Putting in pierced earrings is often a variable activity–sometimes it takes 30 seconds, sometimes 30 minutes.  And that's if I don't drop the earring or the back on the floor.  Most often, I can retrieve it myself, but there are many times that Sandie or Earl have to go searching.

Pills are a particular challenge.  I don't take many, but one (the smallest) has to be cut in two.  Half a pill is taken, the other half either goes back in the bottle or (surprise) ends up on the floor.   Of course the pill color is close to the bathroom floor tile color and I frequently need to bite another humiliation bullet again.  "Earl!  I dropped my pill..." The other pill comes in a blister pack that always foils me.  Screw it.  I get out the scissors.

Eating is always an adventure in avoiding calamity.  I appreciate having a plate prepared for me so I don't knock over some glass or another.  I'm not as skilled with chopsticks as I used to be and sporks (or foons) are my new favorite eating implement. My table setting and body are usually covered with food debris and I can look toddler-like after meals.  Fortunately, I can depend on my peeps to indicate the need for me to brush myself off or discretely remove the kale stuck in my teeth.  Family and friends offer to cut up my food, but I have to draw the line somewhere.  Along with bibs and being brushed off by someone, it's there. 

The grandchildren are aware of my manual limitations and have been very helpful when we play games.  They put markers on my bingo cards, place Scrabble letters on the board, turn playing cards over, or pick up a die that rolled off the table on to the floor.  One grandchild remarked to her younger sibling, "Grandma's thinker works OK, but her fingers don't."** That pretty much sums it up.

The lesson: When the humor factor seems elusive, I can always count on family and friends.

I can still manage my signature gesture. 

*Previous post:  We have contact
**Previous post:  Out of the Mouths of Babes, paragraph 5