Chapter 447 - Changes in Sleep Pattern

On most afternoons for the last couple of weeks she has asked to go to bed, usually for an hour, sometimes 2 hours. Although not severely dyskinetic, she complains that her legs are uncomfortable and painful, eased by raising her legs onto her recliner and resting them on a pillow. She mostly wakes refreshed from the afternoon sleep and is dyskinesia free. Combined with being put to bed at 7PM when she sleeps almost immediately, rarely watching TV, and if she does, she falls asleep anyway, means she wakes early between 4AM and 5AM, tossing and turning, switching her wall fan on and off, causing me to wake early, of which I am feeling the effects. And I hate rising in the dark, daylight saving must end soon; she goes to bed while the sun is still up and I begin the day in the dark. One thing I am unable to tolerate is a flow of air swishing across me at regular intervals from her remotely controlled wall fan; in the gloom she tends to press the "swing button" and seems unable to start the fan without pressing "swing" as well, then she stops and starts the fan repeatedly. I have highlighted the "swing" button with Texta but still she is unable to avoid it. Such petty things loom large causing irritability.

Soon after 6AM each day I replace the Duodopa cassette, change the flow rate from 2.0 to 4.9 mL/hr (the rate at which she performs best during the day, as far as I can tell) and apply Ganfort and AZOPT drops to her eyes. Until recently she dozed again after these actions but now she tends to remain awake, sometimes being content to remain quietly in bed while I do a half hour of treadmill exercise while watching a DVD lecture. Then after I shower and dress I help her to the loo on the Sara, trying to have her ready on the commode for when the Wild Dog person arrives to shower her. Having her ready too soon or too late tends to be stressful.

Just after 9AM this morning we went down town. Coffee after buying her some magazines, a wander around KMart, then half an hour in a bag shop for a new handbag for her, followed by a few minutes in a clothing store for a jacket for me, all followed by a slow voyage through the super market. Back home again with all the shopping put away allowed us a lunch by 2PM. She enjoyed the outing whereas I was rather worn out and light headed from pushing the wheel chair. Unsure of our relationship, the woman in the bag shop awkwardly queried whether she was my mother, I replied "No, my Dearly Beloved". I'm unsure whether she caught what the woman said. A few years now since someone voiced such a comment.

Dr H., the doctor we saw about the colonoscopy  (but is now unable to do the job due to an accident, another will do it instead) wrote a script for a blood test concerning her thyroid readings. The test was done early in the week and on Thursday we were asked to see our GP about the results. Our GP was away so another saw her. He saw no concern in the results, telling us that the figures were the same for the past couple of years. Next day, Friday, Dr H.'s nurse rang about the results, puzzled that the GP was unconcerned about the results, then saying Dr H. would deal with the matter. The stand-in GP did say that the thyroid can impact constipation. I did not speak to the nurse, I may ring back tomorrow.

Chapter 446 - Just Too Tired

We're going to bed in daylight; daylight saving must have at least a month to run. Last evening the sun broke through the storm clouds making our street appear as at midday as the Wild Dog helper assisted her to bed. I was sweeping the floor of sewing threads and crumbs. Someone comes nominally at 7PM; I suspect their arrival time depends on whether another "client" follows us; especially in the morning when someone may turn up 5 to 15 minutes late, giving a reason as "delayed with previous client", "alarm didn't go off because ..." or as a couple of mornings ago "our house lost power" - the whole street? I asked, "don't know" was the answer. I'm tempted to install some form of Bundy clock in the shape of one of our Surface Pro's on the kitchen bench top, just in case the management demand an extension for each visit from the allotted half hour. I have noticed they tend to run over time when they don't have an immediate next client, and such time becomes welcome social contact for her.

Most evenings she is disinterested in TV, DVD's or NetFlix. I tend to go to bed early now as well, read an eBook for a short time until I tend to drop the eReader as I nod off. I am too tired to pursue family history and anyway, this dungeon is too hot. I attempt to watch the ABC's "The Drum" whenever possible, since it is on early evening; whereas other political/social comment are shown too late for me to maintain my concentration. Thankfully, my interest can be piqued by that meat head Trump buffoon; reality TV played in a white house.

I am stressed by the time a Wild Dog carer arrives, placing her on the loo, wiping her bottom when needed, helping her clean her teeth, getting out day clothes or nightie plus incontinence pants & pads.
When they are running late, even only a few minutes, she becomes stressed and uncomfortable sitting either on the loo or the commode, which stresses me all the more. I realise the difficulties for carers to arrive exactly on time; it's impossible; in years gone by I experienced the same issues with customers in a big city.

A message during the week told us that Dr H., the lady who was to do her colonoscopy suffered an injury from a fall so will not be doing the job. Someone else will.

In the two weeks since her rough throat and stuffy nose (which I then caught and am now largely over the problem) she continues to experience excessive saliva and/or phlegm, spitting large dollops into tissues. This morning I noticed dark mucky stuff on a tissue. She says that has not happened before, that it came from her throat. I should have photographed the mess; I will the next time to show our GP. A blood test for Dr H. for her thyroid on Thursday last at our GP's surgery.

In our local free paper this week was mention of a "neural knitting workshop" at our shopping centre today, Saturday.When I asked her, she was interested in attending. So we went in the middle of a thunderstorm down pour. After asking what the workshop was all about I remain puzzled. The project will make a display of neuron shaped objects somewhere but for what exact purpose I don't know. I assume "brain plasticity" came into it somewhere but was not mentioned. There were two methods of making a "neuron"; by knitting or by wrapping wool around straws or sticks; she opted for knitting. She began following a pattern, beginning with the cell body well enough but when the pattern continued onto dendrites and axons she began to do her own thing, the result becoming a cancer deformed neuron. The straight forward (not to me) knitting instructions for the body she readily followed but when it came to making the root-like extensions she was at a loss, unable to imagine how to proceed. I suspect this was much the same experience she has with her sewing projects at home. I left her there while I did some food shopping; when I returned her legs were very dyskinetic so I quietly, almost, wheeled her away to the car. I needed to bang my way between tables and chairs of the food hall to get out. I felt embarrassed; she wasn't.

After some lunch and a big poop she sleeps. She had a large motion when I first took her to the loo this morning. After both sessions her senses had her believe there was more to come, as in the recent past causing her to wish to remain on the loo for extended periods. Dr H. suggested Benefiber in addition to Movicol and she is now passing greater bulk; I just hope the sense of incompleteness goes away.

This morning when I changed her Duodopa pump for daytime running I reduced the flow rate from 5.0 to 4.9. Since the increase from 4.8 to 5.0 her breathing worsened, several panic attacks were averted by taking two soluble Panadol (it's the thought that counts) and once by a Kalma that she particularly asked for. At these times her dyskinetic legs move quite rapidly. As always, mornings are mostly good and her condition deteriorates during the afternoon, when she usually wishes to raise both legs onto a chair or lounge. Yesterday I rested her legs across my knees, stroked her legs and she fell asleep.

A few days ago as she sat on the loo and "pushed", her left leg below the knee went numb. Dr H. suggested concrete blocks in front of the loo so that she was in more of a squatting position; I bought some but her leg dyskinesias still kick them out of the way because they are not heavy enough.

A little while ago at 3PM she clicked the CB radio call button after sleeping  slightly over an hour. I left her joining dots in a colouring-in book we bought the other day.

I must ask Wild Dog to quote for a week of respite to see whether her Level 4 package budget can tolerate the expense.

Chapter 445 - Another Procedure

A visit to the eye specialist on Thursday gave good eye pressures; 12 and 17 I think they were, so her glaucoma is under control so her next visit will be in 12 months' time and an optometrist check up in 6 months.

Our GP had given a referral for her to see a lady doctor H. in Hot Air City about bowel movements. We saw her on Friday last. A very informative doctor. A physical examination in her room was not possible because, as always, the inspection couch was very high and approached by steps. A colonoscopy is planned at the private hospital where the L5 job was done. Dr H. wondered whether the L5 job may have damaged nerve fibres to cause defecation difficulties; we are unsure when her current problems began. I mentioned that her left leg began to fail prior to her introduction to Apomorphine. Way back in 1995 she was treated for diverticulitis problems but neither of us can remember the details. Dr H. thought her PD presentation was strange, calling it a-typical; she is not the first to do so. Also commented that she had her fair share of cancers. In discussing diet she told us that the "2 Minute Rolled Oats" I eat every morning (only me at present) is useless because the processing removes the majority of fibre. The colonoscopy will take place on Wednesday 8th March. The clinic nurse suggested, since we are more than an hour's drive away, that she be booked into hospital on the Sunday afternoon so that the "cleansing procedures" take place in hospital rather than at home. I'm in agreement, I don't wish her to be "caught short" at home and our friendly insurer can bear the cost. I must contact West Beer PD Clinic for advice for Dr H. and the hospital concerning the impact of the cleansing procedure on her uptake of Duodopa.

Dr H. wrote a script for additional blood tests because her reading of the recent blood tests ordered by our GP show low thyroid values.

Her Duodopa flow rate is now 5.0, after having been reduced in steps to 4.5 then brought back up to 5.0. At 4.5 she was very sluggish, disinterested in sewing and dull. As I increased the flow rate I noticed her punding increased (counting coins, sorting cutlery) and her tuneless humming returned, although I had not noticed its lack until it began again. At 4.9 she commented several times that her breathing was difficult. She continues to be troubled by thick saliva.

Last Thursday she began the sniffles, by Friday I had a sore throat, developing into a full blown wog, so I am suffering in our heat wave conditions.