Chapter 443 - Unexpected Behaviors

Yesterday as our youngest grand daughter from Pivot City was about to leave she decided to pack into 3 shoe boxes and a small plastic container numbers of porcelain figurines collected from years ago, usually items I had bought on my way home from trips, and kept in a glass display case that she had inherited some years ago. Each piece was wrapped in old pieces of clothing, mostly old nighties I think, and I had to print the names of the grand daughter and her 3 siblings on the duct tape I used to hold the lids on. One ornament of an old swaggy with a fishing line and "tin" tied to a toe was mine, given to me (she received something else) by a friend just before we left for the West in 1992; feeling emotional about her motivations for her actions, I had no wish to protest. Not that it mattered about "ownership", I felt terribly sad that she felt the need to give away, dispose of, her treasures well before she became incapable of doing so. She became fixated with the activity, migrated to gifting a canteen of cutlery, before opening small blue boxes of teaspoons, cake forks and suchlike in small blue boxes I used to buy for her on special occasions at Proud's in Pitt St Sydney way back in the late '50's, years before we married. I would not have prevented her from gifting those as well, but my eyes were stinging, as now as I write this. On New Year's day our son and family visited; he was gifted a small collection of Toby Jugs.

Again yesterday, she wished to go outdoors in her wheel chair. I asked her not to fool about in the narrow raised garden bed around the rear courtyard. She is helplessly attracted to pulling out mint (mistakenly planted some years ago), ripping out the mint runners, any unrecognised plants whether weeds or other, removing dead leaves etc and using her fingers to dig the loose soil. She enjoys running the soil through her fingers it seems to me. She began doing so while wearing a thumb/wrist support glove on each hand which I then washed and hung out to dry. After half an hour I brought her inside out of the sun (for I do not know whether she remains extra sensitive to sunlight), she protesting, dirt up her arms, on the wheel chair and in the tread on its wheels.

She protests that she has nothing left to do other than sewing, and that not very well. Last Wednesday Wild Dog began a 4 hour session on Wednesdays from 1000 to help her with sewing and craft activities. I hope this will be enjoyable for her because she is decidedly not keen to return to the respite sessions on Wednesdays and Saturdays where "they don't do anything".

Sorting drawers, boxes, cupboards continues unabated, although I must confess the house needs such activity. But not quite as frequently or thoroughly. Recently a lot of our older clothes were packed and hidden somewhere. Since many of her slacks had become too big for her meant buying smaller sizes meaning shopping for replacements, and that is good for her, although she complains that I fail to dawdle enough while pushing her wheel chair between racks of clothes.

I have maintained the Duodopa pump flow rate 5.0 ml/hr until this morning when I reduced it to 4.5 to see whether her mid to late afternoons are less dyskinetic for her. Most afternoons she feels very bad and dyskinetic and needs to sleep for an hour or so. Bolus doses seem not to be beneficial, although on several occasions the dyskinesias have reduced following the extra does.

The FitBit was attached to her right leg on 12th January to monitor whether a bolus was effective in reducing her afternoon dyskinesias as she sometimes thinks it does. The chart below does not suggest any reduction.

Bolus' were given at 1535 when dyskinesias were beginning and 1535 and 1800 when rather vigorous. The X axis lacks sufficient resolution for noticing short term reductions but I doubt there was any impact.

We asked our optometrist about my schedule for her various eye drops. Rather than 5 minutes between glaucoma and lubrication medications suggested by our chemist, we were advised at least 20 minutes, preferably 30. Even though I have prepared the schedule below, being a forgetful old flatulent, I am unable to stick to it. Perhaps I should find an alarm for my mobile but that will mean carrying the sod thing all day long.