Chapter 612 - What Cost is Advice

 Today I took her to an appointment to see the neuro she saw some 6 months ago. I'm a slow learner, that's what I am. Yesterday I had to leave a message on the cabbie's phone asking him to take us to the appointment. A return SMS implied a transmission error in the time we needed to be picked up. So I had to ring him back to correct the time, saying that the surgery had changed the time of the appointment; for I had no idea whether I had spoken the incorrect time, the voice to text process was flaky or the cabbie himself had made an error. I neither wanted to appear an aged idiot or to suggest that he had made a mistake. Also yesterday the anaesthetist from the hospital rang about my admission to the hospital for  the second attempt to finish my nose job, and that made me read the form I needed to sign, the last lines mentioning that I should inform them if I had a skin wound and that made me wonder about the procedure to remove something from my neck, to be done elsewhere on the same morning. Matters like these ruined last night's sleep. So this morning I rang the hospital and was advised that having the two procedures on the same day was not recommended so I rang the the other surgery and rescheduled that procedure. Also yesterday I wrote a page of text for the neuro to read quickly rather than me waffling to give him the picture of my concerns about her dyskinesia.

This morning I was ill at ease on this rainy miserable day. I dressed her in scruffy slacks rather than the pair I keep aside for appointments (they are crinkle free, slippery, very stretchable and easy to remove and replace in toilet cubicles although such actions are no longer possible when out and about because of her none weight bearing legs), intending to change her into them later when I replaced her pull-ups while putting her on the commode prior to our "outing". When I ran out of such trivial exercises I suggested we play Scrabble, beginning with the simplest version (for kids only just able to read and write) the rules of which I have difficulty interpreting. The next version was equally demanding so we ended up playing the conventional version, although we did not keep score (for she no longer has the concept of doing so). As I watched her selecting tiles I realised that her fingers were forming a pincer action some distance to the side of the tiles she wished to move; as if there was an error in the relative positions between what she saw and what she attempted to grasp. Tonight I had her touch my finger held in front of her face and her own nose as I have often seen clinical types ask patients to do; she had little trouble doing so/ A puzzle.

Anyway the cabbie collected us half an hour before the appointment time as I had requested so we arrived some 20 minutes early. Then we waited for 35 minutes past the appointment time before the neuro called us into his room and then excused himself for a minute or two. No apology for his delay. I gave him my typed description to read, saying that doing so is quicker than me waffling. In return he scribbled on a piece of paper some curves illustrating a patient's response to episodic levodopa consumption and the points where dyskinesia may occur with long term use, mentioning a number of factors, including constipation, that may modify the dyskinesia events. I don't think he responded to my comments about her dyskinesia, when lying reclined in her wheel chair disappearing, when transferred to bed to lay on her right hand side. Such a simple example screams out for a simple explanation! He suggested continuing giving her one Symmetrel daily (I intended to do so) and phone him in December. He also recommended keeping in touch with West Beer. I failed to mention that a member of the West Beer team suggested I look for a "local" neuro now that getting her to West Beer was too difficult and, well, too costly, in terms of bang for buck. I assumed that this neuro may send an occasional report in that direction rather than me supply a lay person's (can't be sexist!) waffle. 

My text for the neuro follows (redacted of course!):

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                                                                                      Diagnosed with PD 13th September 1991

Dyskinesia Problems

Symmetrel was prescribed from September 2018 to reduce dyskinesia, beginning with one capsule then progressing to three each day. Symmetrel was discontinued due to excessive hallucinations and nightmares in March 2019 .

Only laying on either the right or left sides in bed, accompanied by rubbing the calf or foot of the affected leg, has ever given relief from dyskinesia. Recently these activities have become less effective and on some days dyskinesia has been almost continuous.

Beginning on Friday 19^th November 2021 one Symmetrel capsule was given each day from the remaining few remaining in a container from 2019 . The CMI for Symmetrel says persons over the age of 65 should not take more than 1 Symmetrel per day.

There was almost no dyskinesia observed on Saturday 20^h November but since then perhaps the same or slightly less has occurred than in previous weeks.

Dr F agreed to provide a new script for Symmetrel on the understanding that [She] was to see you on 26^th November as already planned.

This afternoon, 25^th November, [She] was laying on her back on her wheelchair which was reclined to its fullest extent and her legs were very dyskinetic from about 1400. At 1445 I suggested she lay on her bed on her RHS. Within 5 minutes of being on the bed the dyskinesia had stopped although she did not go to sleep and was still awake at 1530. A little after 1600 she was asleep when I routinely replaced the Duodopa cassette on her pump.

[She] has made two unusual comments since taking Symmetrel, both on the 24^th November, at 0535 a comment about “flooding” and at 2015 a comment about “getting the kids ready for school”.

[She] goes to sleep during the day quite often in the last few months.

Recent Medical History

In May 2015 [She] had a Duodopa intestinal pump attached to provide her PD medication.

In October 2015 [She] underwent  L4/L5 and L5/S1 laminectomy and rhizolysis, later followed by BOTOX and serial plastering of her left ankle in February 2016. None were effective in alleviating the dropped foot problems of her left foot.

[She] has poor circulation to both feet. Both are usually cold to the touch but quite often the right will be noticeably hotter than the left. At times both feet may be a blueish colour.

Currently her right leg and arm usually show greater dyskinesia than the left whereas some years ago the left was more active.

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So what is there about laying on either side, with or without massaging of a foot or a leg, that can relieve dyskinesia almost immediately? The rapidity of relief suggests to this lay person that the cause is not change in absorption rates in bowel or intestine due to internal movements. Surely this is of interest to someone other than myself?

I believe the neuro wants me to phone and report the outcome of the Symmetrel "trial" in a few weeks. As I paid the account I was handed an appointment card by a receptionist for 1115 on Xmas Eve. I must ring and check whether that will be considered a telehealth call and at what cost. I am inclined to cancel it.

Chapter 611 - A Day of Discovery

  Last Thursday and Friday in my memory were the worst most active dyskinetic days for her that I can recall. Once again I went searching for "solutions". There are none. Except for references to Amantadine, also known as Symmetrel which she had taken between September 2018 and March 2019. My notes give no clear explanations of why she began or stopped taking Symmetrel. I assume West Beer prescribed and agreed with ceasing the dose for soon after cessation Exelon 4.5 patches were prescribed "to make her feel better". What my notes do show is that she ramped up beginning with  one Symmetrel on Sunday 30th September 2018  to three on Sunday 14th October 2018 and was only taking two Symmetrel  at cessation on 7th March 2019. She had many hallucinations, bad dreams and talking in her sleep during this period.

In reading the Consumer Medicine Information sheet I found under the heading "To Treat Parkinson's Disease .............Adults over 65 years old: Take only one capsule daily." So why had she once been taking three?

Distressed with the dyskinesia she was suffering I looked in the cupboard where I kept the left over pills she once took prior to Duodopa, not expecting to find any Symmetrel because I had thrown out anything that had exceeded its use by date. There was only a Symmetrel bottle with three tablets in it. So she took one Symmetrel on Friday, Saturday and Sunday . Friday was an "average" day but Saturday I made notes throughout the day saying "No Dysks" but there were some instances on Sunday. Yesterday I asked our GP for a script for Symmetrel to continue with one tablet a day. Today she became very tired and confused during showering so we returned her to bed until 1000, then she finished breakfast before she had her session with M who rings for a chat and to play Trivial Pursuit for an hour each Tuesday. At 1120 her legs were mildly dyskinetic  when she told me she felt like going to sleep. So by 1145 I had her back on the bed where she quickly went to sleep, breathing gently and quietly; Her BP was 135/90 and pulse 71. I am assuming this is an example of a "Zombie Attack" (as I call it) which she periodically suffers and for which she has been admitted to Emergency several times. I remember vividly being told by a doctor on Xmas Day several years ago to "let her sleep before calling the ambulance". So at this stage there is no need for panic, she will continue having a Symmetrel each day and I will advise the neurologist when she sees him at the end of this week.

PS At 1315 she woke, I slid her from the bed onto her wheel chair and she is now eating lunch.

Chapter 610 - Lest We Forget

 Neither of us remembered a Saturday of 58 years ago on the 9th. The day came and faded away like any other, only one remembering, and sending a card that seems to be lost in the guts of the postal system. I blamed myself for not handing her the calendar blocks that morning, forgotten most mornings, a device I thought may help each of us note the beginning of each day, perhaps helping us to register the passing of each day. So on the spur of the moment I just took her the blocks, telling her today was the 14th, and she moved the two blocks accordingly. 

I have been trying to enjoy an activity with her each day, perhaps Scrabble, or Bingo, or Crosswords, or to cut some Roses to bring inside, just something, anything, for us to do together even though the effort comes to very little, yet that little still counts. She gets most pleasure from sorting objects, often in drawers and cupboards which she opens to simply see what may be inside (even though she may have been in there a month or so ago) and once inside objects must be removed then returned, perhaps placing items in different plastic or cardboard boxes. Each week after Coles has made the weekly delivery of food stuffs she folds up each plastic bag, perhaps six or so, into tight rectangles, holding them in place with elastic bands, then placing them in a cupboard to give to one of the Carers to arrive for her shower or bed time, and the Carer takes the folded bags to another client whose daughter is incontinent and needs bags in which to place pads and such. She gains a sense of achievement for being helpful in this way. 

As I left for the Chemist this morning she had decided to fold a cardigan to put away in drawer. Even she has been feeling the cold at times during this phase of unseasonal weather we are suffering. On my return she had moved to another drawer holding her stock of nighties. After I wash such clothing I roll each item and stuff them into this drawer which is a little small to hold the quantity. She has been attempting to fold each nighty in a rectangular shape to better fit the drawer I suppose. 

Then shortly before lunch time I suggested I buy her for lunch a Big Brekkie from the local take-away coffee place, two poached eggs, bacon, a sausage, grilled tomato, fried mushrooms, hash browns and toast. Although there were pieces left over of bacon, some toast, the skin of the tomato and the mushrooms (which she did not fancy at all) about 75% of the meal was eaten. The two poached eggs were the first items to disappear. For reasons the rest of society find strange I do not cook or eat eggs in any form what ever (I overlook the fact that eggs seem to be a component in most cakes). While she enjoyed her meal I had nachos. We decided to leave the two vanilla slices I bought as something for our evening meal.

Her nighty folding was interrupted by lunch and she has continued with the chore. I spend only a few minutes each week rolling the nighties and putting them away. Now some hours later she is still at it. Unfortunately such activities initiate dyskinesia in her legs. I may have mentioned in past posts that rubbing her legs, usually the calf, may often stop bouts of dyskinesia, also, in bed, placing a soft pillow between her lower legs and leaving her feet uncovered to remove any tension from sheet and quilt. A few nights ago I discovered rubbing the soles of her feet almost instantly stopped the dyskinesia, well most times anyway.

After the CBT Depression and Anxiety course enlightened and relieved me of my unrecognised symptoms I have deteriorated once again as I finish the 4th lesson. However, I have completed another portrait stitch out, am writing this blog, complete a Lumosity exercise most days, often tread mill and watch a lecture at the same time, began searching for some facts about my great great grandfather and walk around our village most days. And these activities I try to accomplish Mindfully. 

Chapter 609 - A Morning Like Some Others

 These nights now that I have broken the habit of either listening to Radio National (shame that I am missing useful, interesting programmes) or to music selections from Prime I am usually asleep by 2100, wake due to forces of nature once or twice before my main phone blares forth with an alarm and Alexa warbles another alarm at 0600 each and every morning, alerting me to rise and put a new cassette on her DAY pump before removing the NIGHT pump that had been delivering duodopa to her during the early hours. Then alarms also alert me to fitting a new cassette at 1600 and then swapping the NIGHT for the DAY pump at 2200. This is the new procedure advised by West Beer around the time she had the stoma tubing replaced recently (I may not yet have written about that saga). No explanation was given for running a pump  between 0600 and 2200 and the another pump between 2200 of one day to 0600 the next morning. I suspect it is an attempt to provide more defined flow rates to a patient rather than having a carer/patient manually change the setting twice in each 24 hours. The last time I admitted her to our local hospital after a Zombie Mode session, West Beer feedback to the local hospital suggested that such events were caused by patients mal-adjusting the pump settings and/or forgetting to turn a pump on. 

This mornings events proved those ideas wrong. I was unable to wake her at 0600 this morning. She was laying on her back, breathing strongly, almost snoring. There was no change an hour later so I checked her BP on her little wrist monitor and her oxygen level with the oximeter. Her BP was high at 162/95 and pulse 93 and the oximeter showed 97% oxygen and a pulse of 79. There was no change by 0800 when the Wild Dog carer arrived to shower her and I told her her services were not needed this morning. At 0845 she woke, I showered her and dressed her and by 1000 gave her breakfast.

The CBT training for Depression and Anxiety that I have been doing has encouraged me to continue my activities that I had given up, of which writing this blog was one, but I don't intend to write in great detail. Enough is enough.