Chapter 577 - A Week that Was

 On three mornings this week I have returned her to bed with bad dyskinesia prior to a Wild Dog Carer arriving to shower her. I then shower her about 0930 after she has slept and the dyskinesia is absent. Except this morning when the dyskinesia would not respond to gentle rubbing of her legs and/or rotating her in bed. I suspect this is a deteriorating condition. Most nights now I either reposition her in bed after making an old man's visit to the loo or the dyskinesia of her legs rattles her bed enough to wake me. Last night I made no notes about repositioning her, so I suppose I didn't, but I'm sure the noise of her legs woke me several times but due to the short duration of the dyskinesia I did not get up to attend to her; or perhaps I returned to sleep myself without attending to her. Now late on a Sunday morning I am very tired, frequently yawning, so I will simply transcribe my hand written notes of today, so far.

0500 Talking in her sleep.

0600 Occasional bursts of dyskinesia.

0613 Asleep on back.

0618 As I moved the pump from under her a burst of dyskinesia began. Flow rate adjusted from 3.0 to 6.5 for day time. Morning dose of 1.0.

0621 No dyskinesia. I showered.

0640 Asleep on back, no dyskinesia.

0650 Burst of dyskinesia while still asleep.

0710 Burst of dyskinesia and holding the grab rail over the bed.

0725 Slid her from the bed onto the commode. Bad dyskinesia. Decided to return her to bed and not shower her when the Carer arrived.

0750 Carer arrived and helped my try to rub her legs  and rotate her in attempts to calm the dyskinesia. At times her legs calmed then dyskinesia began again. Gave her sips of water.

0830 The Carer left, she had another job to attend to, but said she could return later.

0845 Replaced the Duodopa cassette and the pump batteries (routine tasks). More sips of water. Dyskinesia continues.

0900 Dyskinesia continues, has been on back, raised in a sitting position for about 30 minutes. I decided to turn the pump off for 30 minutes to see what impact occurred. Left hip was sore so rolled her onto RHS.

0905 When asked whether she was better or worse she replied "worse". and the dyskinesia was noticeably faster.

0910 She asked to sit up so rolled her onto back and raised her head. Dyskinesia continued strongly.

0912 Restarted the pump at 6.5 and gave a bolus dose of 2.0. More sips of water.

0916 Pump returned from "Dose" to "Run" mode. She said she was "feeling just the same." Asked whether I had had breakfast.

0920 She said she will have her usual 2 crumpets for breakfast.

0927 Ate 3/4 of a crumpet with melted cheese.

0932 Dyskinesia suddenly stopped

0934 Some dystonia noticed but no dyskinesia.  

0937 Wants to piddle so slid her onto the commode.

0938 Sipped water, piddled and dyskinesia began again.

0949 Returned her onto the bed, fitted some incontinence pants, laying on her back, wanted only a sheet covering. No dyskinesia.

0951 Seems asleep.

1006 Not asleep, on back, inspecting her fingers, no dyskinesia.

1030 Awake, wants to get up, no dyskinesia.

1034 Transferred her to the wheelchair and to the backroom to finish her breakfast, no dyskinesia.

1100 Had completed breakfast, no dyskinesia.

1200 She was repositioning the recliner chair, no dyskinesia. She remains in her nighty, I will not shower her, perhaps may do so when the Carer comes this evening.

The writing I intended to complete this morning will not be done and I feel like a siesta about now at 1230 and she has no dyskinesia.

At 1300 as I gave her the usual fruit smoothie and biscuits she has for lunch, she was humming.

The following was added at about 1030 the following day, 16th November, to complete this day's story.

1520 Dyskinesia began  about 1/2 an hour ago. Feels stiff, gave a 2.0 ml bolus.

1530 Dyskinesia not visible, she says her feet are tingling, has them up on the recliner.

1535 Dyskinesia began again.

1555 Vigorous dyskinesia.

1600 Increased flow rate from 6.5 to 7.0 ml.

1610 Dyskinesia has stopped, Tingling in both feet.

1640 No dyskinesia.

1720 No dyskinesia.

1800 No dyskinesia. Ate her evening meal.

1830 No dyskinesia. Replaced cassette, flushed the side port with 2x20ml of water, retaped and cleaned the stoma, good colour. The Carer gave her a sponge wash and put her to bed.

2012 No dyskinesia.

2030 No dyskinesia. Flow rate reduced from 7.0 to 3.2 ml/hr (I assumed night rate needed to be proportionately raised as well).

2305 She woke me to arrange her bed clothes and roll her onto her RHS, no dyskinesia.

Monday 16th November

0440 Dyskinesia as I came back from a loo visit. Rolled her onto her back and the dyskinesia stopped.

0609 She was awake with dyskinesia. Morning dose 1.0..

0612 No dyskinesia. Pump to new day rate of 7.0 ml.

0615 Dyskinesia began, rolled her onto her RHS, dyskinesia stopped. She said she had been "awake for ages and had a good night's sleep". So did I.

0700 Asleep, no dyskinesia.

0730 Awake, transferred her onto the commode, a piddle, then her feet onto the pedal machine, no dyskinesia.

At about 0750 the Wild Dog Carer arrived to shower and dress her. 

Up until now, 1100, we are enjoying a normal day without dyskinesia. I assume her state will remain "normal" until she acclimatises to the current dose rates, when I will need to experiment yet again to find a happy set point.