Chapter 560 - Responses to Cries in the Wilderness

Perhaps my age makes me uncomfortable when I attempt to express my ideas, my concerns, my observations over the phone. I usually feel that the other party does not comprehend my words, my emotions, my ideas as I attempt to describe a situation or make a point; and after the conversation ends I fear that I may have omitted a key detail to assist the hearer's understanding and that stresses me not knowing. So instead I much prefer to use the written word so that I then feel we, myself and my correspondent, have the same information for further debate or action.

So for about an hour and a half  on Thursday morning I wrote the following email, here edited to remove identification, to her neurologist and clinic nurse up in Big Smoke.

Her current Duodopa flow rates are: Day 7.0 Night 3.2 Morning Dose 1.0 Bolus 2.0

The night rate was increased from 3.0 to 3.1 to 3.2 because from around 0300 She was waking with vigorous dyskinesia and vocalising while asleep. Now she is waking with dyskinesia between 0500 and 0600, usually complaining that her legs are stiff. In checking my notes I see that I had earlier increased the night rate in steps to 3.3 for the same reason before returning it to 3.0 because her condition was worse. Now I seem to repeating my previous steps; disturbed sleep is getting to me.

Beginning in early May She sometimes began asking to return to bed with leg dyskinesias after showering at 0800, then waking around 0900 without dyskinesia and quite "normal". Several times she has asked to return to bed in the early afternoon with dyskinesia and wakes after about an hour asleep without dyskinesia. Each afternoon, by at least 1600, she asks to have her feet raised onto a lounge chair because her feet and legs feel "very tight and stiff" and usually are dyskinetic as well.

Beginning in early May by early evening She was becoming increasingly stressed with dyskinesia and stiffness so Wild Dog Care was requested to assist putting her to bed at 1800 rather than 1900 each evening.

As I mentioned at our last visit, I accidentally found that Her  dyskinesias stopped when she was turned onto her right side. Now I may need to turn her onto her left side, or even return her onto her back, to stop dyskinesias and I'm beginning to suspect that a change in body position is not as effective as it once was.

I made a serious mistake on Saturday 30th May when I forgot to replace the Duodopa cassette. That morning I was woken at 0340 by Her vigorous dyskinesias rattling the safety rails of her bed. Since she had been on her right side, I rotated her to her left side, the dyskinesias stopped and after 5 minutes she was asleep. At 0520 I needed to roll her onto her back to stop dyskinesias. I changed the flow rate from 3.1 to 7.0 at 0545 but because she was quiet I chose not to disturb her further so I did not replace the Duodopa cassette or flush the side port, intending to do those later. After breakfast She did a Dance for PD session and then because of the pleasant sunny morning I pushed her in her wheel chair along the local river pathway for an hour. On the way home we bought fish and chips for lunch at our local cafe with take-away access. She ate 2 pieces of fish and most of her chips. At 1615 she declared she felt like "walking", so I placed her wheel chair in position so she was able to use the pedal machine. At 1700 I found her asleep, pedals had stopped, and on trying to wake her she opened her eyes and giggled. I gave her some ice cream, she ate some then fell asleep. At 1720 I checked the pump setting was 7.0 and when I took the carrier bag off the pump I found the cassette empty. I replaced the cassette and on restarting the pump gave her a bolus of 2.0. At 1750 she ate cheese cake and ice cream. Shortly after 1800 she was in bed reading a book until 2000 after which there were  sudden short bursts of dyskinesia at 2100 and 2200.

The Exelon patch continues to be replaced daily.

I will be thankful for any advice that may help alleviate Her suffering the effects of dyskinesia. 

Almost immediately an automated response from the clinic nurse told me she was away on extended leave.

Friday morning I rang the 1800 number for the state PD association in Big Smoke, asking to speak to a counsellor. I was directed to a nurse which I didn't mind at all; I just needed to discuss our situation with any empathetic person with an understanding of PD, especially the practical issues involved and in our case, long term implications ; C was just the person. I think we spoke for well over an hour and by the end I could detect the subtle cues that I had spoken enough. I can't remember hearing any specific actions I needed to do yet I was satisfied that our conversation was positive and helpful.

No sooner had I hung up before the phone rang again; another clinic nurse rang from West Beer hospital. I presume he had read my email of the day before or had been asked by the neurologist to contact me. He thought the duodopa pump settings were wrong, that Bolus doses should stop the dyskinesia, he asked me to describe the dyskinesia in terms of speed, irregularity, rhythm. I tried unsuccessfully perhaps to do so and said I will video the bouts of dyskinesia to send to him but he doesn't want me to do that. I suspected that he may have been able to draw conclusions from the nature of her leg kickings  and I thought to myself, but did not say "Shit mate I have only one patient whose legs kick slowly or rapidly, sometimes in larger or smaller motions, sometimes small or high speed "tremors" just in her feet and if you can't understand me without interrupting I will become upset. You see many PD sufferers and I can't appreciate the finer points of what you ask." Fortunately, knowing that help will not come my way if I express my feelings, I did not speak my mind. At the conclusion of our conversation I was unsure whether I agreed to any specific actions so last night I set up a video camera and a tablet as a clock face to record dyskinesia events although last night was not nearly as bad as previous nights this week. One thing the clinic nurse suggested was admitting her to West Beer hospital for observation and medication adjustments; something I have not repeated to her because I know her immediate reaction will be to refuse to go, especially in this plague season. Some months ago when I mentioned this to the neurologist he was not keen on the idea.

The games mentioned in my last post were ordered after discussions in a couple of Dementia meetings on Zoom. Another arrived this week; Tangrams. The game I ordered is in a spiral wrapped book form, the cover of which is magnetic as are each of the seven playing pieces, making it ideal for the pieces to be positioned by someone who lacks fine movement hand skills. Also included are diagrams of the shapes to be formed, hundreds of them, plus answers. Trivial to make the shapes I thought (being quite good at a similar game on Lumosity) but Tangrams is decidedly difficult and I'm afraid she does not comprehend what is required; she seems unable to  understand that a copy of a small black diagram needs to be made by positioning larger coloured pieces. Arriving the same day was a bucket of Meccano pieces which has attracted her attention, in that she spent several hours yesterday sorting and counting the various shapes, nuts, bolts and other bits, although without assembling anything.

As I write she is sorting through knitting and crocheting magazines to give to the Wild Dog Carer who looked after her on Friday afternoon while I photographed some old house ruins with my new camera. Unfortunately she rips out of the magazines patterns she thinks useful for the Carer who has never knitted but is keen to learn. I sent an email to Wild Dog hoping to have the same Carer be with her each Friday afternoon for 3 hours which I have decided to make my respite time devoted to photography.

This week she has caused some damage. The pedal machine had been glued to a sheet of MDF until she decided to move it. The machine is now screwed to the MDF after the soft plastic feet and excess dried glue were removed. One morning I found the long pivoted mirror (the type ladies like to check themselves in when going out) moved from its usual position and on repositioning it I noticed 2 screws had been torn from the timber frame at the pivot on each side. When I asked her what had happened she said the mirror was "warped" and became difficult to position. The mirror is now out of further harm's way while I figure out what to do about the pivots. She had scraped white paint and timber chips from the skirting board where it forms a corner opposite the bathroom door. Yesterday I suddenly came upon her as she was about to cut the sleeves off the blouse she had been wearing; she said she wanted short sleeves rather than long ones. I managed to discourage her doing so and helped put the blouse back on. I suspect that blouse's life is threatened , as are other blouses with long sleeves.

In regard to her dyskinesia, I am pondering whether regular turning while she is in bed and regular bouts on the pedal machine during the day may be useful for minimising the problem. She seems unable to understand what I am getting at and difficulty voicing how her body feels at dyskinesia onset, other than saying "tight" or "stiff" which suggests lack of medication even though an increase in medication, a a 2.0 ml bolus dose, is ineffective.