Chapter 419 - Slow Changes

Duct tape corrected the sole problems on the physio boot.For three nights she wore the boot to bed on her left foot, loosening the fittings or removing it completely because of pain (in her right leg) or throbbing in both legs after 3 hours or so. One night I removed the boot as she showed signs of a panic attack. Then for two nights the boot remained on until the next morning. Physio A decided this was not very productive. We were loaned a plastic AFO to wear on her left leg during the day, while wearing sneakers, as her usual shoes are of a comfortable type lacking any support across the top of the foot. When I took the AFO off after one of her days at respite I found a large red "rash" at the position on her upper calf had been covered by the plastic and velcro of the AFO. Some foam on the AFO and less tightening of the velco removed this problem. Physio A. visited us at home last Thursday and worked out a routine for her to stand from the wheelchair to the fore-arm walker, then 10 or so stand on toes, followed by some "marching on the spot" before sitting again. Physio A and I were both surprised that she was able to keep her left foot so almost flat on the floor. Unfortunately, since then she and I have been unable to reproduce such satisfactory results.

I have improved the beeper board, adding an electronic counter to it so that whenever the beeper sounds due to her left heel "touching" the floor the counter increments by one. The whole contraption seems to give her a degree of achievement in that the beep provides unequivocal feedback of success as well as the counter  showing the number of successful actions. Quite a lot of force is needed to force her heel to the floor, the amount of force depending upon the angle of her shin to the floor. If her shin is vertical I am unable to lean heavily enough on her upper leg to actuate the beeper without causing her pain. So changing the angle of her shin to the floor provides an adjustment of the force required; I position the board so that she is only just able to lower her heel to cause a beep.

One morning with 3/4 of an hour to spare before respite at Wild Dog she decided she would sew up an apron, for that day an apron parade was planned. She failed to finish it in time, she protested strongly about having to leave it, so she took an apron she made years ago. The new apron is still not finished, almost a fortnight later. The new tablet I bought for her to play word games is not being played. One day she bought two jigsaw puzzles, one of 1000 and the other of 1500 pieces cheaply at respite. I have helped her with one but the edges are incomplete many days later, although I must admit it is very difficult.

I am annoyed when she is distracted by an object in a cupboard, drawer or fridge then proceeds to rearrange the contents of same so that afterwards I am unable to find things easily.

One afternoon we forgot to replace the Duodopa cassette, running it dry by 10PM. We realised that during that evening her leg shakes were minimal. So the following day we "forgot" again on purpose; same result. Then on the third day the cassette was replaced about 4PM; again a shake free (well almost) evening. The flow rate remains at 5.0, planning as per Dr F neuro to raise to 5.2 mL/hour next weekend.

I have a group picture of us and the kids taken when we must have been in our early 40's, in a park in Batman City; she was so pretty then, just to bring the image to mind causes my eyes to sting.