Chapter 316 - Don't Know Where We're Going

Let's not become defeatist and depressed about all this. But since we have seen no "improvement" in her OFF states for the use of a bolus I decided to track her performance at a "walking test" yesterday, Saturday, from seated start from an armless chair at back door pushing her trolley to front door, return and sit.

0600 Usual meds Sin 100/25, Sin CR 200/50, Sif 1.5, Der 40, Mot x2. Pump still running.
0830 Showered and dried herself seated on shower chair.
0840 Pump started with new syringe 6ml Apomine + 14ml saline following  shower, 28.15 indicated on screen.
0845 Walk Test 28.75 secs. Video taken only of this instance.
0900 BP 139/96 66
0930 Walk Test 30.5 secs; left foot felt heavy
1000 Usual meds Sin 100/25, Sif 1.5,Der 40. Walk Test 29.34 secs. Left foot not as bad as earlier.
1100 Walk Test 29.44 secs. Heaviness in left foot wearing off.
1130 Walk Test 29.41 secs
1200 Walk Test 31.25 secs Says she is "exhausted". BP 114/61 68
1215 Walk Test 31.44 secs
1245 Walk Test 52.10 BP 131/81/72. Exhausted, needed fan blowing air, eyes closed while seated.
1300 Walk Test failed at 39.72 at 1/2 way point unable to proceed at front door, feet tingling, feels sleepy, tired, sipping water, rescued in wheel chair. BP 121/73 67. Applied Bolus, pump reading changed from 23.44 to 22.42, face does not look alert.
1315 BP 126/76 66. Drowsy, slow of speech, slightly glazed look to her eyes
1319 Falling asleep in wheel chair
1322 Sipping water
1325 Wants to lay down and sleep
1330 BP 128/76 68, then falls asleep in wheel chair
1333 Face suddenly brightened, sipping soda water, burps, yawns
1345 Unable to stand from wheel chair, unable to move to kitchen chair
1349 Left foot began tingling
1351 Her "horror" feeling across her shoulders.
1353 She said "everything itchy", yawning, almost sneezed.
1355 Walk Test 70.13 secs
1356 Legs ache, noticeably alert, eyes clear
1358 Use of walker to toilet to void.
1400 Usual meds Sin 250/25, Sif 1.5, Der 40, Mot x2.
1405 Remained on toilet, sensing bowel action but nothing happened, face hot, ear lobes very sensitive. Needed assistance to adjust clothing
1412 Walked pushing trolley back to her recliner.

At this point I left for my dungeon to do some on-line shopping

1500 (approx) Walked trolley to toilet and return by herself.
1515 (approx) Began hand sewing at kitchen table.
1542 Walk Test 32.81 secs, Toes curling and tingling.

The above suggests to me that she was ON earlier than 0830, the time of having a shower, until about 1230, with no observable OFF time prior to her 1000 meds. Then she went OFF from 1230 and was rescued by the Bolus prior to her 1400 meds (otherwise she may have been OFF until well after 1500 without the Bolus)

Perhaps it is possible to adjust her meds to avoid the OFF dip around 1230 onwards. I think if that dip were to be filled in then she may almost feel a "new" person.

So I prepared a schedule with the Bolus doses specified so that she may rescue herself before going OFF, but that has always been difficult for her determine, that point of going OFF. 

For instance, she may be hand sewing at the kitchen table ( where she keeps herself occupied these days, mostly, rather than her sewing room where she feels "cramped") and suddenly calls me on the CB when she discovers that her fingers are no longer supple enough to sew, whereupon she becomes scared because she is unable to rise from the chair, go to the loo, her recliner, whatever; by that time it is way too late for corrective action. So the new schedule dictates a Bolus at 12:00 midday, then 4 hourly after that, no sooner because the gendarme in the device prevents the extra dose sooner than 4 hourly.

Last week her arms and face became itchy, reminiscent of other summer weather when her sensitivity to sunshine became evident. I took her to Dr Flower who went through the usual check list of changes in foods, laundry powder etc that may have caused it. People are suspicious (perhaps I am self conscious) of the one arm covered, one arm bare sunshine test I performed on her some years ago. Although in this present case, I'm uncertain that she has been exposed to sunlight. And she has thrush this time. Usual prescriptions including anti-histamine tablets. Anyway, she mentioned she needed full sleeved blouses to protect her arms, This morning I suggested we go to that clothing shop she haunts whenever she has a voucher (yes one left from birthday presents). We left home shortly after 11am, parked in the god-awful car park, shuffled into the shopping centre, into the shop where she resigned herself to sitting on her walker while I grabbed suitably sized bits of filmy stuff for her to inspect. Waiting at the counter with both voucher and credit card I convinced her to push the Bolus button, she did, at 11:40am. Leaving the shop, she wished to wait awhile before entering the car park, she on her walker, me on a bench seat. Twice we saw the girl (woman way less than 50) who is coming to our place tomorrow to cut her hair as well as mine (I have opted out of my regular barber; too long away from home, too early attendance to have the barber himself, so if a woman is to hack my hair then it may as well be done at home). Anyway, after 20 minutes she was capable of returning to the car. On the way to the Club for lunch I intended to go to our chemist in the other shopping centre but escaped from a nasty traffic jam as two anal cavities towing full height vans attempted to enter the car park to discover their A/C's were about to be scraped off by the height restriction across the roadway. Although my reactions bothered her, a 3 point turn got us out of there and onwards to the club.

At the Club we needed to swap meals because the chicken stir fry she had was too spicy for her so she exchanged for my Thai beef. Potential itch reaction meals I imagine. Then we finished off with too much cake and ice cream. Arrived home stuffed.

Thursday last in Hot Air City again to see Polly the PD nurse and the Considerate Neuro. In attempting in my usual light-hearted manner to suggest that PD professionals should live with their patients for awhile to fully assess their symptoms and capabilities I think I was mis-understood by Polly. Then the Considerate Neuro mentioned later that Apomine was not a one-way trip, that it was possible to back out. Rather than back out, we need to see more adjustments to her pill/Apomine regime to iron out this rocky road we are on. Anyway, another visit this coming Wednesday.

Her neuropathy (that's what I believe it is) has lessened when I measure its impact on her; she still has toe tingling/bending and leg aches and cramps but without taking all of her attention. When I think to do so, I keep a glass filled with soda water, her nightly wakenings to piddle are fewer, she wakes me less frequently for assistance. So why do I remain shagged out most days?