Chapter 501 - Experimental Changes

The neuro Dr F asked that she take one Symmetrel 100mg each day at 0800 for a fortnight and when dyskinesias began the Duodopa flow rate was to be increased from 5.5 to 6.0 mL/hr for the first week and to 6.5 mL/hr for the second week. The fortnight has now passed without me seeing any changes of value; some days are dreadful, some good. The instructions were to increase the flow rate once afternoon dyskinesias begin. Unfortunately, on some days the dyskinesias begin in the morning and carry over into the afternoon, so I have tended to increase the flow rate as soon as I see her legs kicking, if I notice of course or she tells me; we have lived with this for so long we tend not to notice. As of yesterday, Sunday, the next step in the experiment began; higher flow rates and a Symmetrel at noon. I am about to post 14 days of FitBit traces, suitably annotated, to Dr F. There is just no way I can verbally describe the day to day changes. I record in my note books the changes in flow rate and the taking of Symmetrel and casual observations but it is just too much information to see trends. At least the FitBit provides a "picture" even though the time and step scales are coarse and how an irregular jerk or fling of her right leg (where the FitBit encircles her ankle) relates to "steps" I don't know or care; just that the trace gives an idea of timing and magnitude of her leg movements. The neuro had contemplated having her in hospital under observation; perhaps my comment that was hardly a real world situation may have dissuaded him; perhaps that may be necessary should nothing come of these present tests.

Yesterday, a beautiful windless spring day, I took her shopping early. Her dyskinesias bothered her so much she had no enjoyment while out. I bought her a craft magazine then we came home. Beginning in bed in the morning till bed at night she had sensations of her legs "twisting" (dystonia?). For most of the afternoon she sat outside knitting on the rear patio. She is tolerating the FitBit on her right leg much better so yesterday three periods of dyskinesia were recorded; from 1000 for 2 hours, from 1300 for 2 hours and from 1830 for 4 hours. The latter was mostly in bed while reading a Mills and Boon on her new eBook reader now mounted on a small TV mount on the wall above her bed. The mount eliminates problems of her holding the reader. She reads almost every night when in bed. I may install a similar mount for her on a wall out in the living area.

On another front, she saw her opthalmologist on Thursday 20th September. He asked that no Ganfort be applied to her eyes until 5th November (Simbrinza had been discontinued on the advice at the Eye Clinic at Hot Air City). When I asked him whether allergies to glaucoma medications happened often he replied "All too frequently". Siguent Hycor 1% was prescribed to be applied to her eyelids each night. On that same day, the funeral for our Village's original warden was held at a small town on the way to her eye appointment so I attended for half of the church service; she was not up to going in so remained in the car.

And on yet another front, I had another of my "funny turns" when I have difficulty maintaining my balance and walking; that feeling of too many glasses of red plonk swallowed. That was on Monday 17th September. Fortunately my driving does not seem to be effected, only getting to and from the car, for I was able to make an appointment with our GP. On standing and turning to leave the doctor's room I tended to continue turning, almost fell, so I was asked to sit in the waiting room for awhile. Next afternoon I had a CT scan of my head. The following Wednesday our GP showed me the scan which suggests some atrophy of my cerebellum although the accompanying report says "No acute intracranial pathology". Probably the words "no acute" are code for "no danger of immediate death". The GP describes my problem as Ataxia. Late last Friday afternoon I had an MRI scan up at the Highlands Town and now I need to see a neurologist. Perhaps I am reading too much into the MRI images being handed to me without an associated report or CD containing all the files. The receptionist at the scanning place went looking for a CD but returned saying that if there is one it can be sent directly to the doctor.