Chapter 557 - Fine Tuning

She has been awake lately, leg dyskinesias happening, when I get up once or twice at night on my old man shuffles to "my" loo. I have woken in the early hours to rattles from her bed frame while her legs kicked. The neurologist advised adjusting duodopa rates slightly in fine steps days apart to permit her symptoms to stabilise before another step. Her night rate had been increased to 3.2 ml/hr some short time ago until the night of Monday 4th May when I increased it to 3.3 because she had begun to complain of her legs being "stiff"of a morning and her body or legs were "twisted". Confusing, since that suggests to me her dose rate maybe too low, yet her bursts of dyskinesia are frequently severe. So on Friday night I made a large change in the night rate by dropping it down from 3.3 down to 3.0 ml/hr. The daily rate has been kept at 7.0 ml/hr. Yesterday was the best day for both of us in a long time; I set up Dance for PD for her, then she sorted the last load of washing in our bedroom but became distracted re-organising clothes already in position then after lunch I returned her to complete the job, although there remains shirts to place on hangers. She returned to attempting to stitch together those knitted panels worked on for what seems like weeks now. The evening meal shortly after 1700, then to bed at 1800 after the Wild Dog Carer arrived after which she read one of her old Mills & Boon novels, actually reading after I turned my light out. I had a carefree, most enjoyable day watching the live streaming of the Yarra Valley Writers Festival. She did not even call me for trips to the loo, each time I checked she said she had taken herself. Most remarkable!

Except for this morning. Although dyskinesias began as I replaced the duodopa cassette and the pump batteries (routine job on a Sunday) they quickly ceased and she remained asleep. I flushed the side port. She remained asleep. At 0730 I was unable to wake her beyond the semi-conscious stage so sliding her from bed to commode was difficult. She was hardly responsive when I needed her to push down with her hands on the commode arms  to enable me to remove her overnight pants and pad. She did not piddle. I gave her a bolus of 2 ml. Onto the pedal machine she was limp and half awake. She drank a little water from one of her drink bottles. She was still drowsy when the Carer arrived at 0750. Her shower was un-eventful but I was needed to use the lifting belt around her waist to stand her into the Sara Stedy for the Carer to pull her pants up. She ate her breakfast of buttered scone, diced fruit and orange juice without difficulty. I checked on her a couple of minutes ago for her to do Dance for PD. She had gone to sleep in her wheel chair. I will increase the night rate to 3.1 ml/hr this evening. If her mornings are then reasonable and stabilise at either 3.1 or 3.2 I will then begin to reduce the day rate slightly. I have great difficulty recognising ideal settings for other day-day factors of ordinary living seem to change the impact of medication. Time to check on her again.