I tend to be too instructive, offering too many cues. I am hard on him and hard on me.
- "middle of the road"
- "careful, you're really close"
- "stableize"
- "military turn" (tight space)
- "could you go forward please"
It is easy to see what might happen as he moves about in his chair. But what I see is not necessarily what he sees. And though he just had his eyes checked, is his brain reading the space in actuality? Is his mind problem solving? That's the mystery of Parkinson's Disease.
PD is a medley of symptoms, most caused by dwindling brain cells. It is a complete mystery on our end why it is happening at the rate it is. It is a complete mystery what function will go next and how we accommodate for the missing ability.
Here are a few things I learned in 4 hours:
- it's hard to square up to a table
- it seems more expedient to go backwards, but it is not nearly as successful
- it is hard to carry things and to only do one thing at a time
- navigating tight spaces tough
- it is so easy to bypass that tissue on the floor!
- I think I am rock steady so it is easy to not put the breaks on or buckle up if I am leaning down to get that tissue, but it is what I plead with Russ to do on a regular basis
- moving ingredients in incremental moves to get from the frig to cooking surface is tedious
- you can't hurry to the toilet, you only go as fast as the chair, then stand, stabilize, turn....sigh
- I found myself reaching for things a bit too far, rather than move the chair, NOT a safe move
I am sensing I am about where Russ was a year ago. I was able to get up from the chair easily and stand solid. Russ now struggles with both. Though I did not get a sense of that unsteady feeling, I did get the frustration of having to 'think' about every movement. That of course is an oxymoron because thinking and problem solving is the part that is slipping away because of Parkinson's.
While in the chair, I helped Russ shower, dry off and get dressed. I cooked breakfast, set the table, got all Russ' vitamins, 'tried' to make the bed, did a load of laundry, emptied 3 waste baskets, washed dishes, put up the window shades and worked on the computer. I learned that ANYONE can bump into things, but that it DEFINITELY helps to line yourself up in advance of where you are going (to the table for instance or through a doorway) so you are not crowded. I learned that it's really hard to close a door behind you without some sort of door combat. I found myself doing things I beg Russ not to do: reaching, not putting on brakes, leaning too far, backing up... and most importantly, I learned that I am living with a most amazing man, acclimating to Parkinson's in a way that honors life. Just amazing!