Chapter 434 - Experiments
I came to realise that each afternoon or whenever dyskinesias begin, her mobility is very poor, suggesting she is under medicated. Mobility is difficult to determine for someone confined to a wheel chair so I take as a measure of her mobility and rigidity whether she is able to stand into the Sara Stedy without assistance and whether she is able to stand vertically enough to easily swing the Sara Stedy seat paddles into or out of position. When she is "Off" then she bends forward at the hips rather than lifting her bum.
I am fed up with West Beer for not contacting us between Clinic appointments to offer advice or answer questions. So after coming to the conclusions above, on Sunday 16th November I decided to give her bolus doses of 6ml (rather than 2.0 ml set in the pump at West Beer) at 0850 and 1400. The results suggested such a large bolus was too much, dyskinesias were vigorous, she was stiff, feet very tight and tingling throughout the day. The FitBit graph showed distinct "quiet" periods between 1500 and 1700 and again between 1900 and 2030, after which strong dyskinesias began again, and she became very hot. A couple of Panamax at 2220 then within 10 minutes she was calm and went to slept.
The next day I only gave her bolus doses of 2ml at 1200,1420, 1610, 1815 and 1915.
The following day she had 2ml bolus doses at 1000, 1200, 1400, 1600, 1800, and 2000. This was the calmest day, the most mobile day she has experienced in a very long time. There was only a brief spate of mild dyskinesia at 12 noon just after the physio person from Wild Dog had left after running her through the usual range of simple exercises. A "good" day not to be repeated. Yet looking at the FitBit graphs some days have less dyskinesias than others yet by day's end we both feel we have experienced a bad day. I suspect though that was dyskinesias begin the taking of a bolus dose has negligible effect and I am somewhat irregular with my timing so I must set an alarm to remind me every two hours.
During our last visit to West Beer I made comments suggesting she has sleeping problems. In this case there was follow up in the form of a letter to our GP. Last Thursday I took her to Hot Air City for a consultation with a speech therapist. That night I wired her up to a sleep monitor so we both had an uncomfortable night.
Someone told me of the benefits of a vibration platform. So I bought one on e-Bay. I tested the device on her feet while she remained seated in her wheel chair late Thursday but the result was dyskinesias in both legs, perhaps too late in the day. This morning I placed only her left foot (the one with dropped foot) upon it at a vibration of 700hz and the only effect was tingling up and down her left leg when she touched her left calf. Then she discovered that her right leg reacted the same way.
Her eyes have been stinging, not relieved by spraying "TearsAgain" so yesterday I spoke to the chemist and he suggested Zaditen drops. Although both of her eyes were stinging, I only applied a drop to her right eye. Stinging has now gone from both.
This morning we went shopping for clothes for her, some new towels and some coffees, and a lot of walking for me. I am feeling my age.
The time is too late to write about depressing matters so I'm off to bed.
I am fed up with West Beer for not contacting us between Clinic appointments to offer advice or answer questions. So after coming to the conclusions above, on Sunday 16th November I decided to give her bolus doses of 6ml (rather than 2.0 ml set in the pump at West Beer) at 0850 and 1400. The results suggested such a large bolus was too much, dyskinesias were vigorous, she was stiff, feet very tight and tingling throughout the day. The FitBit graph showed distinct "quiet" periods between 1500 and 1700 and again between 1900 and 2030, after which strong dyskinesias began again, and she became very hot. A couple of Panamax at 2220 then within 10 minutes she was calm and went to slept.
The next day I only gave her bolus doses of 2ml at 1200,1420, 1610, 1815 and 1915.
The following day she had 2ml bolus doses at 1000, 1200, 1400, 1600, 1800, and 2000. This was the calmest day, the most mobile day she has experienced in a very long time. There was only a brief spate of mild dyskinesia at 12 noon just after the physio person from Wild Dog had left after running her through the usual range of simple exercises. A "good" day not to be repeated. Yet looking at the FitBit graphs some days have less dyskinesias than others yet by day's end we both feel we have experienced a bad day. I suspect though that was dyskinesias begin the taking of a bolus dose has negligible effect and I am somewhat irregular with my timing so I must set an alarm to remind me every two hours.
During our last visit to West Beer I made comments suggesting she has sleeping problems. In this case there was follow up in the form of a letter to our GP. Last Thursday I took her to Hot Air City for a consultation with a speech therapist. That night I wired her up to a sleep monitor so we both had an uncomfortable night.
Someone told me of the benefits of a vibration platform. So I bought one on e-Bay. I tested the device on her feet while she remained seated in her wheel chair late Thursday but the result was dyskinesias in both legs, perhaps too late in the day. This morning I placed only her left foot (the one with dropped foot) upon it at a vibration of 700hz and the only effect was tingling up and down her left leg when she touched her left calf. Then she discovered that her right leg reacted the same way.
Her eyes have been stinging, not relieved by spraying "TearsAgain" so yesterday I spoke to the chemist and he suggested Zaditen drops. Although both of her eyes were stinging, I only applied a drop to her right eye. Stinging has now gone from both.
This morning we went shopping for clothes for her, some new towels and some coffees, and a lot of walking for me. I am feeling my age.
The time is too late to write about depressing matters so I'm off to bed.
posted by Kilpike | 10:10 pm
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