Chapter 425 - When Experts Tell Me ......

To West Beer PD Clinic on Wednesday 29th when we were consulted by two neuros unseen before. I was unsure which was the senior; for one asked questions while the other remained quiet.  The usual range of questions. Of course her legs and feet exhibited few signs of dyskinesia, she appeared well medicated. I showed the communicative neuro an abstract paper "Apomorphine and Diphasic Dyskinesia" by Duril F. et al I had printed out way back when she was still on Apomorphine; he skimmed it and reacted as if he was familiar with the problem of a PD patient being reasonably stable of a morning then deteriorating with increased dyskinesias in the afternoon. No one at West Beer has seen her transition between these states, the clinics are always in the morning when her legs are reasonable; appointments to Dr F. are always in the afternoon when her legs are bad. Although discouraged from showing video clips, this time I came prepared with a USB stick with clips throughout the days of  24 Mar (flow rate 4.2), 21 April (4.8), 26 June (5.2). Interestingly, to me at least, is the fact that on 21 April her feet barely trembled at 1615 the time of the last clip I took that day. Perhaps the neuro did not look at that clip during the Clinic session; he made no comment about it and it slipped my mind to mention it. In looking at my diary I see no comments about changes or difficulties that occurred on that particular day, if I could figure out why life would be so much better. I think she gave them the impression that she suffered serious hallucinations by recounting when I used a step ladder to assure her that there were no spiders on the top of the bedroom window drapes. I just searched this blog for a reference to spiders; I made reference to that incident in Chapter 110, Tuesday November 13 2007 when she was taking a heap of pills. Hardly relevant today in her current condition! And that was way back before Apomorphine. Neuro Dr H then came into the room and directed the Duodopa flow rate be reduced gradually by 0.1 mL per week or so even though we had been increasing the rate at Dr F's direction. They set the pump to 5.1 mL/hour. They also object to my idea of running the pump overnight which I suspect may be better that transitioning to Sinemet every night. When I asked why, hallucinations and dyskinesia were mentioned. Do we really know what we are doing? Nurse J replaced the PEG fittings and inspected the stoma. I was asked to run only one cassette from 0600 to 2200 each day. On the way out she had to complete a psychological type of survey.

We missed a phone call on Friday 1st July from the local hospital Rehab for her to be admitted on the coming Monday. Thinking they wanted to only discuss her admission I rang on Monday (no one could tell me anything about the matter over the weekend) to find they were serious; so much rushing about to gather items for her to take. She took little interest in the matter; she is fearful I will take her to an institution and leave her there. She concentrated on pulling apart destroying an excellent knitted back completed a few days ago but in attempting to correct a small defect she had wrecked it so over a period of days pulled it undone and chopped parts undone with scissors.

The Rehab staff settled her in quite well. She was admitted with her current medications and a medication list which was ignored. Monday night they lacked a luer fitting to connect the syringe to the PEG fittings to flush the tubes. On Tuesday I made the comment that I thought such fittings would be normal hospital equipment. Fortunately, on Monday Nurse J of West Beer rang in response to an email I had sent her about the admission and she emailed me sheets of instructions for starting the pump at 0600, stopping the pump for showers and stopping the pump at 2200, much more detailed than anything I could provide. I told the staff that she must have Movicol and the appetite medication.

She is being exercised twice each day, dyskinesias permitting on afternoons. They seem unconcerned about her wearing the cast on her left leg.

I have spent an hour or two at the hospital each day, except yesterday I quickly visited, leaving clean clothes and 7 cassettes of Duodopa, because I have been sneezing quite often all day. Today is much better, so I suspect my problem is the form of hay fever I get at this time of year.