Chapter 582 - That is Good

 On Friday morning, coincidently Xmas morning, at 0618, after I had set the Duodopa pump day rate and initiated the Morning Dose, she asked "Can you turn me over?" "Which way?" (she was on her back) "Toward the wall" so I rolled her onto her right side, a few dyskinesia kicks then she relaxed, saying "That's good". I felt, briefly, that I had given her a Xmas present beyond value. We no longer give presents, anything bought in November and beyond is a Xmas present. Unfortunately, the remainder of Xmas Day was not all that comfortable for her as I will theorise in the following.

Back on the early morning of December 22nd she was very dyskinetic, short bursts until 0430 when I rose to roll her onto her right hand side (Parkies have problems rolling their bodies in bed) and then rubbed her left leg to quieten the dyskinesia that had persisted for at least 15 minutes. About 0600 I set the pump for daytime. At 0655 she was awake, very dyskinetic, asking for the loo. I placed her on the commode, noticing that the back of her nightie was very damp all the way up to her shoulders. No, that dampness was not due to a piddle leak from her incontinence pull-ups, it was sweat. For piddle leaves a temporary stain the colour of tea whereas sweat leaves her nightie quite clear. Although her body, arms and legs are often quite tacky with sweat, especially while dyskinesias occur, this was the dampest I had seen her clothing. Health professionals always speak of fluid intake being important for countering dehydration problems and quite honestly, encouraging a Parkie to drink fluids when they tend not to exhibit a need to drink water, tea, coffee, soft drink (in increasing order of harm) is difficult at the best of times. Anyway, I added two soluble Hydralyte tablets to the bottle of water I attempt to have her drink each morning while on the pedal machine before a Wild Dog carer arrives at 0750. The remainder of that Tuesday seems normal normal day according to my notes. On the following day, Wednesday, I failed to note whether I gave her Hydralyte tablets with her morning bottle of water but I did note that I gave her a Hydralyte ice block around 1230. Then on the Thursday at 0715 I recorded both a Lax satchet (every morning these days) and two Hydralyte tablets. Being a slow thinker (but Kepner-Tregoe trained about 40 years ago!) I began thinking noticing a change in her behaviour, perhaps more alert, more assertive, less dyskinetic. So why, what changes may have impacted her? So by Xmas morning I thought perhaps my attempts to keep her hydrated may be combatting the dyskinesia. That morning a Google search for the terms "dehydration dyskinesia" returned a smothering of articles, only one impressed me; "Serum sodium and chloride are inversely associated with dyskinesia in Parkinson's disease patients". Although I am unable to understand the detail of the tests and statistics detailed in this short paper by 12 academics at a hospital associated with Soochow University, Suzhou, China, the short paper published on Brain and Behavior [sic that is USA spelling] conveys sufficient to me to appreciate that the salt constituents of the Hydralyte tablets may have a beneficial impact on her dyskinesias. But what about Xmas day which was very "ordinary" for her, dyskinetic, uncomfortable legs and miserable? That morning I gave her apple and black current flavoured Hydralyte tablets as a change from the orange flavour I had given on the other mornings. This morning I was about to give her apple and black current again when I noticed the tablet surfaces were very rough; checking the use-by-date as 2014 the few remaining tablets in that tube were put in the bin. I presume ambient humidity was the cause of the surface roughness of the old tablets yet I have no idea whether the chemical composition other than sodium bicarbonate would have changed. Several days ago I had restocked with new Hydralyte tablets. So are these Hydralyte tablets effective for her dyskinesia? I really don't know, her dyskinesia has not been eliminated but while they seem to give her better QOL I will continue giving them to her and will check with her GP in a few weeks when she needs new scripts for Duodopa and Exelon. As I have been writing she has been tidying her sewing room (again!), developed dyskinesia and needed her legs raised.

She seems to be "unlearning" skills she once had. From the "monkey bar" over her bed hang two remote controls, one for the wall mounted fan and the other for a number of devices including her bed lamp and a small desk fan sometimes positioned to blow directly onto her face. On Friday night she asked me which control to use to switch on the wall fan. The other remote control has some half dozen pairs of small buttons; for quite some time she has confused on/off of each pair of buttons and lately has forgotten the function of each pair of buttons. Perhaps I should simplify the buttons for her. There are two sets of brakes on her "house" wheel chair, a simple brake she is able to engage onto each wheel and another brake which she is unable to access mounted on the hand grips at the rear. Even though she has been seated in this wheel chair for most of her waking hours for a number of years now, she usually has difficulty finding the actuator lever on each side down near her legs.

As for myself, I seem to have reduced my dependence listening to Radio National throughout the night to attain and remain asleep and as a result the feeling of light headedness no longer happens after breakfast. Also the feelings of stress and anxiety which bothered me when thinking of the small tasks confronting me each day, such as telephone calls, appointments, small tasks about the house, have left me and I am feeling much better. In consequence, I am able to remain awake longer reading, family history and such distractions without a feeling of despair that I am unable to cope.

A little over a week ago, after participating in a Parkinson NSW Zoom meeting I rang their support line with something on my mind, I don't remember what, and spoke with a carer for about an hour and a half. Afterwards I felt refreshed, flushed (as in pull the chain) of unnecessary thoughts so perhaps that conversation helped me get rid my "dependence" on Radio National that I mentioned in the previous paragraph, as I think and write. Until I wrote this I had not associated the result of making a phone call one day and becoming alive again some days later.

Speaking of phone calls, on a call to a distant cousin (did she ring me or I her?) some weeks ago the conversation moved to COVID and I mistakenly admired Dan the Man down in Victoria, which resulted in the call lasting over an hour as she berated his control of the pandemic in that state. On Xmas Day, at noon, she rang on my mobile. I dropped the phone back into my pocket without answering because I was attempting to dish up our paltry little Xmas dinner we the pair of us alone were about to enjoy. Yesterday, feeling guilty, I returned the call and the COVID topic came up as expected so I told her that I had asked another cousin not to visit until we had been inoculated and she understood my point of view since we are aged farts. When negative comments were made about government controls and how society survived  the Black Death, the Spanish Flu, and other contagions I did not bother to argue that society back then lacked jumbo aircraft, cruise ships, enormous sports stadiums, motor vehicles and shopping centres and tyrants not quite as mad as Trump. So in consequence our conversation was of appropriate duration for the season at hand.

Now, at the beginning of another man made marker of time the intention is once again to please the crowds and display to the gawking world that our state can afford the odd millions to pollute Sydney Harbour with noise and smoke of fire crackers.

Chapter 581 - Far Less Than Perfect

 I hadn't intended to waffle here today but I feel so out of sorts that I decided to produce my usual yearly Blog2Print booklet and equivalent PDF file of my last 12 months of jottings so I am forcing myself to write today as my final memorial this year. Just in case I am not up to the task later.

Each morning after breakfast, from about 0830, I begin to feel weary, unable to concentrate, my head feels "light" but not dizzy, I lack energy (whatever that means) and I have difficulty concentrating, all as if I had a bad night's sleep, which was not the case, sleeping solidly from about 2100 to 0600, perhaps getting up twice and also she asked me to turn the "radio" off at maybe 2200. She was speaking of the Amazon Alexa on which was playing light classical music very softly. Usually I sleep all night with an ear bud in my right ear listening to ABC Radio National in bursts because the feed tends to drop our after half an hour or so. The ear bud is in my right ear because the left is deaf. I admit this is not the ideal environment for sleeping. I failed to mention I also wear a CPAP mask all night.

On Tuesday the nurse from the Duodopa distributor called in to do the required regular maintenance on her pump's PEG-J fittings. The nurse was quite informative and will save us the stress of travelling all the way to West Beer twice each year.

Also on Tuesday the Samsung tablet arrived  from way up north and yesterday the coordinator connected to it and after a couple of learning difficulties we connected via Skype. Once the volunteer who will chat with my PWP has some training there will be a regular session between the two. I am unsure how well she will be able participate in a conversation so I am hoping the volunteer is able talk easily; after all, I see a Skype session as a poor substitute for a face to face conversation.

So now to Blog2Print to bundle this year's blogs into other media, none of which will withstand the ravages of time.

Chapter 580 - If We Only Had Time

 After our morning out I had been reclining out the back, reading, until I forced myself inside to write these words. Checking on her in her sewing room on my way through I found her chopping, or hacking, with small blunt scissors the cover of one of a pair of small pillows we bought this morning, pillows with a silky faux fir, inches long on one side. She was unable to explain why she was doing this to the pillow. As usual when I find her wrecking an object she is unable to reply when I ask "Why are you doing this?" she sits quietly in her wheel chair with her head lowered but on this occasion she asked for "Toilet". There is no point in becoming flustered, frustrated or annoyed, although I am saddened, so I wheeled her to the Sara and transferred her to the loo, where she almost immediately passed an enormous turd of an equivalent size to one of the two she did (unknowingly) when I transferred her onto the commode this morning after getting up. In a way, rather pleasing to me because the turds are no longer large marbles loosely stuck together. More about this later.

I cannot remember the last time I took her "shopping" on a Sunday morning; definitely before COVID began. At first I was pleased not to take her because the activity was so tedious for me, pushing her in her wheel chair, while she enjoyed touching, feeling fabric, clothes, handling books, small plastic containers; all those things one sees in what I refer to as "junk shops". If only she was able to propel and steer a wheel chair by herself while I found a place to sit and read a book such outings may have been more pleasant for me. She was not bothered by keeping away from the shops. I began buying fish and chip lunches at the drive through section of the new cafe in our neighbourhood, eating down by the river, until on one or two Sundays her leg dyskinesia bothered her so much I had to bring her home. Then I simply stopped suggesting we go out. Yesterday a Wild Dog carer mentioned that the well known junk shop that had closed over 6 months ago was doing quite well under new management. Actually, I read in the local rage during the week that the manager of the place had taken over the business in his own right and as I saw this morning was doing a good job of it. So without pestering her I convinced her to come with me (I had to dump the last month's collection of used Duodopa cassettes in the sharps bin at Community Nursing) and have a quick look at the revitalised junk shop. I think she enjoyed herself, buying the two small pillows mentioned above, some metres of blue fabric for no obvious reason other than she liked it, several tea towels. I bought a 2021 desk diary. On the way home I only bought 1 box of fish and chips (for she wanted no fish, only half the chips), two slices of cheese cake and a milkshake for her, a coffee for me. She went to sleep for awhile before eating then again afterwards. She had enjoyed herself but whether enough to go again only time will tell.

Some weeks ago I took part in a Zoom'd carers meeting when the topic was incontinence. Constipation (I see this as the opposite of incontinence) was discussed along with graphics of the resulting faeces (I do know the technical word) and the most serious constipation example was graphically exactly what she has produced for a number of years, professionals having told us more water, fibre and a laxative being required to resolve the issue. Three years ago LAX Sachets and Benefibre were prescribed. The "end" product did not change, told the professional this, discontinued the LAX and tried some other laxatives, of which one caused messy problems and another she was unable to swallow. Anyway, I found two boxes of LAX in the cupboard and wishing to read the detailed leaflet of directions which should  have been within the boxes, but were not, I went on line to find same and stumbled on a Product Recall statement, which stated that the instructions with certain  batch numbers directed that a sachet be mixed with 1 litre of water, rather than the correct 125 ml (I think that is the amount) so no wonder the time she used to take to swallow a litre somewhat nullified the LAX's effect on her bowels. I puzzle why neither the prescribing doctor or the chemist failed to alert us at the time the scripts were dispensed. Now with the correct quantity of water the LAX is having an appropriate effect.

I am concerned that there is a lack of enthusiasm for "close" relatives to take over my self-imposed task of recording our family history; one day soon, several years at the most, I will not be around to maintain the records. Then many books, certificates, photos, correspondence etc will disappear into a garbage skip. Even the records digitised and stored on hard drives and on line will be lost as formats, platforms and software providers change over time. There are tasks I have yet to complete. I will enquire what happens to private on-line data currently protected by subscription, perhaps I should publicly store as much as possible on line and to hell with privacy considerations.

A recent email from the USA Parkinson's Foundation tempted me to participate in a mentoring study with others dealing with Lewy Body Dementia (LBD). Almost 20 years ago, when I suspect LBD was becoming a topic of interest to academics, her then neurologist had her take a scan which showed nothing "remarkable" (that interesting medical term). To participate in the study I began answering a questionnaire which concerned me more than a little in terms of privacy, coming to a halt when attempting to enter a preferred contact phone number; the damn thing want a standard USA 10 digit (or was it 12?) phone number and variations of my home phone number area code and country code were unacceptable. So being an "alien" (in the sense we locals were called when working at a couple of sites in my own country) I back-tracked through the questionnaire,  deleting as I went. Anyway, I researched LBD a little and found in a Mayo Clinic site that Rivastigmine, otherwise know as Exelon, and some others "work by increasing the levels of chemical messengers believed to be important for memory, thought and judgement (neurotransmitters) in the brain. This can help improve alertness and cognition ...." Perhaps this is what her current neurologist meant by "Exelon may help her to be brighter" when I asked him why he prescribed it.

I just returned from rescuing her from out on our rear patio where she was unable to steer the wheel chair out of a congested space, pieces of flower stems in her hand and on the pavers, obviously having found "dead bits" in need of removal.

Chapter 579 - Learning Lessons Late in Life

 Without describing my personal embarrassments and stresses entertaining at home and dining at restaurants let me mention that my first meal at a restaurant was when I was aged 20 (or was it 19?) when I celebrated saving 100 pounds in a bank savings account by taking her to a trendy place in the Haymarket area that served "chicken in a basket" and I first experienced the stress of being a "dinner host" in our own home was in the first year of marriage to which you would say "So What?" without realising that, in my formative years, I rarely experienced even being a guest to a meal at someone else's home. Boarding house meals hardly count. And in my early teenage years while still at home such meals never happened. So even now, over 60 years since I escaped from "home" I remain terrified of entertaining at home because I sense my gauche behaviour; perhaps guests fail to do so out of politeness. Until recently I have relied on her to smoothly organise and arrange food stuffs, table preparation and such like while I kept mostly in the back ground. Except for BBQ activities which really cause me stress because the majority of males believe in their own expertise, offering unasked for advice and assistance such as flame hight, time required to seal each side of a piece of steak, how rare was rare, pricking sausages, whether to have smoke pouring from the meat, techniques for cooking onions, and numerous other fads, all of which I resolved by telling each male to cook his own food , the way he preferred. And that meant, being the host, I was the last to use the BBQ. The very worst device was the so called George Foreman devices requiring ages of preparation time and hours to cook legs of animals; woe was me when all the guests had arrived ages before the food was ready. And now, so late in the time of things, the need to play host on my own, yet not really physically on my own, is an uncomfortable experience I prefer to avoid the closer the planned date and time approaches. Am I alone in fearing such social gatherings? I feel as though I am.

So with all the above in mind yesterday, from about 0600, as well as my usual medication chores, commode transfers and breakfast preparation I cleaned the public areas of the house as best as I could before setting out crockery, eating utensils, cheese and nibbles,  cans of soft drink (only one can was used) and a bottle of charders, prepared the coffee percolator and selected a bottle of merlot and a port. Our guests brought the main meal of cold meat and salad. Prior to them arriving, and for the first time ever, I took a little tension  reliever in the form of a small glass of Cointreau. She had been in her sewing room rewinding lengths of ribbon onto frames, to what purpose I do not know. During the meal she sat in her wheel chair at one end of the table, hardly taking part in the conversation, probably because I waffle excessively to compensate. Although, as I have probably noted in other circumstances, she seems to become invisible, not included yet not ignored, as conversation passes her by, or is this observation of mine due to my own discomfort? And after they drove away I realised I had not asked whether any one wanted a cup of coffee and I had not turned on the percolator anyway. They had arrived with take-away coffee so perhaps mine was neither needed nor wanted. Neither of us needed an evening meal and in consequence I forgot to take my evening medications, again.

Good news last week; a call from the person trying to arrange a visitor for her, except that only a person has been found willing to speak to her on a tablet (provided free of charge).

She recently spent several days pulling threads out of squares of a loosely woven fabric. Although she must have had some artistic idea in mind, she was unable to bring its application to conclusion so after tangles of threads were all over the floor and around the wheels of her wheel chair the whole lot was binned.

As mentioned above, a few days ago she began rewinding lace onto cardboard frames. Coming upon some lace with a tatty end she began pulling at the threads until she had long lengths separate from the actual lace. I'm unsure whether  that has been binned.

She found a small embroidered Xmas tree that had a backing glued on its rear, the whole probably had been part of a Xmas card. For a reason she was unable to explain to me, she needed to remove the backing, whereupon she found loose threads requiring removal and guess what? The Xmas tree embroidery was demolished in the process.

The strap of her Duodopa pump bag had irritated the side of her neck which required a band aid. I found the pump bag which was on a belt around the waist . Although in the past she had found this one uncomfortable she began wearing it a little over a week ago. I began noticing that her stoma was inflamed and after a day or two thought that may be caused by the belt around her waist which positioned the pump directly over the stoma. Rather than her insistence of bending forward to scratch and rub blemished areas on the wooden floor or fluff on the carpet. There is slight discharge from the stoma, although that has been worse and recovered. The last time there was any redness in the area was possibly 2 months ago.

I am wondering whether some of what I call "dyskinesia" may be "Restless Leg Syndrome" from which her maternal grandfather suffered. A video clip in a Great Courses series about "Sleep" shows a patient in bed asleep with legs thrashing beneath a sheet, in very similar manner to the action I see her doing. Some research or questions are needed.

I find that she has a better day when she has concentrated on "sorting" objects such as putting away washed clothes. However, she is not interested in sorting objects just for the sake of sorting, as in sorting a box of leggo into shapes or colours.

Lunch time and she has just finished the planned weekly call from the Wild Dog nurse.