Chapter 541 - Woke In Fright

I returned to our home, finding it being enlarged, a few of the family were there, we walked out the back door, began descending a long flight of wooden stairs, she stumbled, falling forward, and downwards, over and over tumbling, ever downwards. I woke in a state of horror, suddenly remembering what my psychologist had told me to do to finalise such a dream so that it doesn't repeat on a future night: imagine a satisfactory conclusion to the dream. I did so, I imagined pulling out my phone, dialling 000, and the Ambos found nothing broken and she didn't need to be taken to hospital. The psychologist gave me a three word title to this procedure (which I forget), saying it was one of the few things his profession can advise that has lasting benefit for a patient. He also suggested writing down the happy ending but who can remember to find pen and paper in the dark?

Anyway, it was daylight, normal waking time, she was awake and as I sat on the side of my bed she asked "What date is it? What day?" "It's Friday" but I had to check my phone for the date which I sort of knew but didn't. We talked about about such matters. She thought the year was 2008 (or some number like that). She asked her age. I asked her birth year. "1942" she quickly replied. "Then take 1942 away from 2019." She couldn't. I explained doing so was difficult for me, I needed to do it in two stages, 1942 to 2000 and 2000 to 2019 then add the two results, confessing that in my family history pursuits I usually reached for pen and paper when calculating long deceased people's ages.
I mentioned that today, Friday, she would soon hear the garbage truck on its rounds. The only other day in the week that may be a signpost for her may be Wednesdays, my respite day, but she said Wednesdays are just part of the routine. She mentioned how uncomfortable she was when she regularly saw the geriatrician (for which I have discontinued the appointments) being asked questions about dates, counting and the like. Coincidentally, I told her I had such an examination at our GP's two days ago when I was unable to remember one of three words I was asked to remember by the nurse who told me on completion of the examination that there were no changes from last year. I was surprised to hear her say that, simply because I had no recollection of ever having been tested and being a wily old devil, I made no mention of my forgetfulness!

So began a normal day. After changing her Duodopa pump cassette, the flow settings, eye drops, I showered and dressed then slid her from bed onto the commode then out to her pedal machine. Except that the Wild Dog carer arrived 15 minutes late, speaking to her phone  on speaker held out in front as she came through the door. The phone conversation continued as her bag etc were placed on our bench top, and from the words sounding from the phone I realised she was speaking about work to one or other of the care institutions she works for. So I said in a very loud voice, looking at the wall clock "J***, you are already 15 minutes late, how about doing your business elsewhere?" After completing the normal expected activities the woman dawdled filling in and sorting the report pages they fill in on each visit. I went about our usual breakfast activities and replaced the Exelon patch on my PWP's chest while the woman made small talk, staying more than the 30 minutes expected of her. I can imagine her telling her next client of an "emergency" that delayed her.

Last Sunday afternoon we attended a matinee performance of "Oliver" in which the son of one of the Wild Dog carers had the lead role. The hall at the local high school was less than half full and the acoustics were awful, although that did not cause or contribute to the wild dyskinesias of her legs. By interval she had enough, wanting to return home.

Last Tuesday she had no problems attending Dance for Wellbeing at the church hall, although the previous Tuesday were very bad, she felt ill, so I did not take her.

Her OCD sessions drive me to anger, even though I know I must circumvent such feelings. She uses knives, spoons, combs, paddle-pop sticks, anything at hand to clean dirt from cracks in the timber flooring, around the edge of the sink and the bench top, the edge of the hotplate, the runners of sliding doors. Surfaces, including the timber floor, are rubbed are rubbed with tissues and sometimes with blue dish cloth or foam plastic pads when she needs something more abrasive. On respite day last week I bought a squeeze mop and a long handled brush and pan for her; my idea being that having correct equipment may limit the damage she does. Of course I forgot a bucket to accompany the mop so I bought the bucket this week. A large box of multi-coloured plastic shapes containing magnets was bought from Kogan; I thought these may interest her but only mildly so. After unpacking the contents of the box just after delivery she was very keen to repack the box, but finding the flimsy internal packaging too awkward to force back into the outer box, she cut up the flimsy packaging to make it all fit, so in consequence, most of the flimsy stuff went into the bin. The carer (who has small children) helped her this last Wednesday assembling the magnetic pieces and that gave her some interest in them but that has now waned.

I have noticed that on days when her legs are dyskinetic her OCD tendencies are much reduced. I must convey this to the neurologist, although I suppose if one's legs are kicking then it is hard to pay interest to other activities.

The other day when I spoke to my GP after my geriatric test he suggested I take some respite and when I replied that organising respite for her was too difficult with the Duodopa pump etc he said "Both go, on a cruise!" I did not answer, I could not, he possibly thinks me a doddery old bloke, unable to think or speak coherently. And if he does, which I doubt, how in the name of hell can I put together enough meaningful descriptive words in a 10 or 20 minute block of time to impress upon him the ridiculousness of suggesting we go on a cruise??? I am yet to convince myself of the possibility of taking us on a motel crawl, north, south or where ever following the one night experiment down the 4 lane to Town Y some months ago after buying the collapsible commode. Escape from our routine may be a necessity, yet I wonder when she travels like a terrified mute imagining all the problems likely to occur along the way. She cannot sit in confined spaces, so rule out buses, trains and planes. On a cruise? Just getting to and from the point of embarkation would be a nightmare.

My new camera was clicked seriously for the first time on Wednesday. I drove to the look out over the town then around some of the back roads. I am not inspired to look at anything I took; I experienced more excitement buying the camera than using it.

I have discovered that having intense interest in an activity tends to help me stay alert in the evenings. About a week ago a second cousin contacted a near relative asking for information about his family line because he was unsure whether he was using the correct surname. You get the drift? A seriously screwed-up (in the full biological sense of that hyphenated word) part of my family and as I have just discovered, more complicated than other kin of mine. I accepted the challenge before another muddied the waters.Simply investing hours sorting out the family interconnections, searching for information, has kept me alert, reminds me how I felt a decade or more ago. Although I have not spoken to the 2nd cousin, his emails remind me very much of two dyslexic friends I have and also a dyslexic cousin who died last year. Each with a brilliant mind yet unable in various degrees of putting words on paper. I fear feeling at a loss once this family challenge is behind me.

Chapter 540 - Some Days are Diamond ........

A scare last Tuesday when readying her for for the Wild Dog Carer to put her to bed; I noticed that her right eye was blood shot in the outer corner. She did not remember rubbing or bumping it. Her sight was OK; if anything, the right eye was better than her left. I sent an email with images to the ophthalmologist who responded the next morning saying it seemed a "simple bleed" and to increase Optifresh drops to 4 per day.

She has had "Intense" dyskinesias (Intense as defined by the FitBit charts when the bars are green and I assume represents 1500 steps and greater in a 15 minute window, the width of the bars, and I think think this is meant to look "technical" for some people) at the following times:

Tue 12th 1500-1730
Wed 13th 1400-1600 2000-2100
Thu 14th 1300-1400
Fri 15th 0400-0500 1430-1900
Sat 16th insignificant
Sun 17th insignificant
Mon 18th 1500-1600 1800-1900

For Tuesday through Friday listed above she was given a small tin of spaghetti in sauce for lunch This represented about 3gm of protein each lunch time. Since Saturday I have given her a piece of toasted sticky bun with a little margarine plus on Sunday a piece of toast and lemon butter. Then for Monday lunch two slices of bread spread with margarine and avocado and sliced tomato.

On Monday I took her to an appointment to see a dietitian who was interested in the FitBit results. She suggested increasing the protein content of the evening meals to ensure intake is somewhat greater than 1gm/kg of body weight, now about 51.5 kg. There were no dyskinesias while seeing the dietitian, who may have been puzzled that I was sprouting that protein at lunch may have been the cause. Lunch today is only 1/2 an hour away as I type, so today I'll give her bread covered in lemon butter which caused her no bother. Otherwise I may need to consider that protein may not be the cause of her dyskinesias. I just realised that her evening meal last night contained 70gms of protein (calculated roughly) which is excessive although she did not eat some pastry of a meat pie. So tonight I will guestimate closer to 55gms. The dietitian recommended weighing her monthly and having a blood test in 3 months to specifically monitor B12.

When she suffers no dyskinesia she becomes obsessed with cleaning, in particular, floors and sliding door runners. Carpet will be scraped and rubbed with pieces of plastic and such to produce fluff  and on the timber flooring she tries to clean the gaps between the boards, especially where the old dishwasher once damaged the timber. Also, the worn finish on the timber appears as "dirt" to her so she wets and rubs the areas which only worsens the appearance once dried. Last week she had all the available cleaning products out from the cupboard beneath the sink, spraying and spreading various solutions across the floor. I took all those cleaning products out to the laundry cupboard, a place she can't reach in her wheel chair, leaving her with a mauve spray bottle for a stain remover containing only tap water which she now uses without being aware. Last Saturday morning she rubbed the surface of the TV cabinet with tissues before moving to other pieces of furniture and cupboards. We use a lot of tissues these days. On Sunday she spent most of the day scrubbing the patio chairs with a brush and water before soaking and washing the foam seats from the chairs. I had to discourage her from pulling at loose threads on the pillows, for once started, removal of a few threads becomes a hole or worse. Anyway, the whole lot looks better now.

I ordered a brightly coloured pillow onto which are stitched various fabric textures, even a small zipper, and some velcro, a touch and feel device for dementia sufferers. It arrived this morning. Not very interested, she suggested I place it on the lounge. I said I would leave it with her other pillows near the TV. Later I noticed her picking it up and kneading it briefly before putting it down again.

The dyskinesias this morning made her feel bad enough not to wish to attend the Dance for Wellbeing group this morning. Instead she has had her feet up a lot without going to sleep and when the dyskinesias cease she sorted stuff in her sewing room for awhile then in between bouts of dyskinesia she began cleaning in corners and behind the TV, I having to assist when dyskinesias returned. The last time she was in the bathroom doorway pulling fluff off the mop head so I changed the mop head and vacuumed the bits of fluff off the floor. So proceeds our day.

The expensive camera I bought a week ago has been played with several times; perhaps tomorrow, respite day, I may have an hour or two to capture an image or two about town. I'm unsure which is worse, dyskinesia or obsessive compulsive problems. Meanwhile, with respect to dyskinesia and protein, I feel much like a sorcerer's apprentice.

Chapter 539 - Just Knackered

Colloquially speaking, I'm knackered. A descriptive two syllable word equivalent of simple four letter words used by the uncouth. That email sent last Monday received the following answer:

"Protein certainly seems to be having an effect. Even a chocolate treat is protein."

Since there were no negative reactions I have persisted with the experiment. A Google document search revealed that such a diet forcing protein intake to the evening meal is called  a "Protein-Redistribution Diet" (PRD). During Monday, Tuesday, Wednesday and Thursday she was more alert than usual, able to easily stand into the Sara Stedy, even began taking herself to the toilet from her wheel chair when I wasn't watching. On Friday she returned to experiencing periods of severe dyskinesia and again yesterday, Saturday. Had she found her chocolate cache I had hidden on a high shelf she is normally unable to reach? She denied doing so. But on Friday I caught her sucking a "Chupa Chups", from of a few bags of lollies given to her by a mate of mine and she was on her third. And again on Saturday morning. I have now confiscated the remnants of the lolly bags, leftovers from my mate's bad habit of advertising "Trick or Treat" bullshit for 31st October on Face Book, that creation of that git Suckerburg (an appropriately modified name, since if Trump's country peasants can replace an "s" with a "z" then surely I can do the opposite). My mate handed out bags of lollies to 416 kids that night!! On the Chupa Chups website one can find the ingredients in the various flavours of these boiled lollies on a plastic stick, and one flavour contains a little over 2 gms of protein, the remainder being various salts and flavours. Surely not enough to cause levadopa up take problems either in the small intestine or at the blood/brain barrier? Anyway, her diet during daylight hours continues to be two tubs of diced fruit and a glass of fruit juice for breakfast (NO yoghurt), then a small tin of spaghetti in sauce on toast, a glass of fruit juice and a small piece of sticky bun with thinly spread margarine (NO Sustagen) for lunch. Her evening meal is an easily eaten frozen cottage pie meal (or a similar frozen meal), ice cream topped with fresh sliced fruits and berries, all covered in custard into which three scoops of Sustagen are mixed then the whole topped off with chocolate topping or other flavouring. Sometimes she is given grilled fish.

The following two images of the FitBit recordings attached to her right ankle 24x7 since Saturday 2nd November show the impact of her having protein at breakfast and lunch.


Minimal Dyskinesia with Limited Protein Intake Saturday 2nd November 2019

Typical Dyskinesia with Normal Protein Intake Sunday 3rd November 2019

Realising that blindly adjusting her diet as I am is not the safest thing to do, I took her to see her lady GP on Friday morning for a referral to a Dietitian on 18th November. Before that I weighed her on the jockey scales at the hospital; her weight adjusted for the wheel chair, duodopa pump, clothes and shoes is 51.5 kg.

On Friday while wheeling her into the GP's room I stumbled a little as I took a seat; this was noticed by the GP who asked "Are you alright?" Of course I answered yes; and I had walked some 500 metres downhill pushing her in the wheel chair from the hospital. Being a cautious sort of bloke, I made an appointment to see the other GP on Monday; my balance is not what it should be.

Last year she often wanted to buy a new watch, the $20 type, the modern day equivalent of the 2 bob watch, at Kmart or Target. A day or so ago I found her trying to open the back of one of these watches, "To see what is inside" she said, working away with a small sewing machine tool kit type of screwdriver, various pins, needles, tweezers and small scissors. "Be careful not to stab your hands" said I. Well she did of course, both stabbed her left hand index finger a number of times and opened the watch. "What will you do with it now?" "Throw it in the bin" she replied, having seen what is inside.

Another of her activities this past week was counting the coins in the box in which she keeps my small change. I tend to use cash to buy small items such as coffee so that I have change in my pocket for her. At least a whole day was spent in the counting of coins, not quite  $100 worth.

I sent an email to the Clinic Nurse at the other Big Smoke hospital, where she has attended all day clinics with Allied Health Professionals, to tell her about discovering the effect of protein I seem to have found affecting my dearly beloved's dyskinesia. She rang me back about 1915 last Wednesday night, a dedicated lady. I was comforted to have a good conversation with her about the impact of protein on PD symptoms in a Duodopa regime.

Our microwave door has given problems, either not latching or to be perverse, not unlatching. In our household a microwave is as essential as an electric kettle. Perhaps more so, since a cuppa can be made in the microwave. The one I bought contains a griller as well, and only cost $129. So the small bench top oven/griller has been pensioned off as well. The old microwave has been left in its cupboard cavity, its door held in place with double sided sticky.

I feel much like that microwave, much in need of being pensioned off. Knackered.

Chapter 538 - Just Simple Problems

I thought I had noted a personal event in one of my recent posts but a quick skim indicates that I hadn't. Some weeks ago, about mid morning, I was sitting here in my dungeon when all of a sudden there was a circular ball of light in front of me, sparkling. The effect lasted much less than a second. There was no pain, no movement in surprise. Just my acknowledgement that I experienced it. Then in contemplating the experience I thought that it was probably a TIA or "mini-stroke" in the visual cortex of my brain rather than a Damascus Road incident. Since then, in self analysis mode, I have taken note of my increasing tendency to mistype, or so I suspect, because without appropriate error records that may simply be my imagination. Thank goodness for those squiggly red lines. My Lumosity trends show my Flexibility score had decreased some 2% during September but has almost recovered and my Memory is slightly down. What! Me paranoid? I'm 7 points below my highest LPI so I can't be too bad.

I sent an email this morning which explains, I believe, why she has had poor Quality of Life and I'm being worn to a frazzle. I drafted a detailed email a week or so ago but realised there was too much detail to see the point (not that I am ever guilty of telling you how a watch works should you ever ask me the time) and anyway my experiment was incomplete.

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A new Exelon 5 patch is  placed on P in the following sequence Left then Right of Upper Arm, Chest then Shoulder each morning about 0830. I see neither good nor ill effects. Even with tape applied across the patches her sweating tends to loosen them.

Several weeks ago our GP had P take a blood test. On that day P fasted then she had a light lunch at a cafe. We realised that evening that she had experienced a "good"day with minimal dyskinesia. On following days I attempted to reproduce that unexpected behaviour by initially not giving her Vitamin C and D and calcium tablets at breakfast. Her daily dyskinesias continued. Once I removed a tub of yoghurt at breakfast and Sustagen at lunch time from her diet she experienced minimal dyskinesias. Because the FitBit records of the dyskinesia of her right leg seemed not to be of interest to anyone other than myself and wearing the device around her ankle was an irritation to P I ceased attaching the device ages ago so I have no record of her dyskinesias during those dietary "experiments".

Two days ago on Saturday, 2nd November, I attached the FitBit to P's right leg and she ate minimal protein during the whole day. Then yesterday, Sunday, she had her normal diet of yoghurt at breakfast, Sustagen at lunch and a typical evening meal we often have of grilled fish of which she did not eat much because she was stressed with dyskinesia of her legs and a few chocolates during the day. By evening P was quite stressed, hot and sweating and her legs pained her. The difference between the FitBit recordings for the two days was quite marked, Saturday showed minimal traces while Sunday showed "intense" bars from about 1400 onward. Today P will eat no protein until the evening meal.

Of interest is P's behaviour throughout most of Saturday afternoon, when, dyskinesia free and using a piece of wooden dowel, she scraped the carpet of her sewing room searching for pins and needles embedded in the carpet. I gave up trying to discourage her from this useless task. So much carpet fluff was produced from her efforts that I had to vacuum the carpet the next day. Also, bending forwards in her wheelchair while scraping the carpet caused a bloody discharge from her stoma.

I will let you know the outcome of P limiting her protein intake to the evening.

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I could import the FitBit traces into here but I will leave that until she has a high protein meal tonight just before going to bed about 1900.

This morning she is alert and very keen to "sort" things, a tendency she has long had but I convince myself that there is more intensity in her keenness when not suffering dyskinesia. The coat rack in our hallway is always overloaded with jackets and cardigans; she is now "sorting it out", telling me I have too many. That after I found and bought a new light weight jacket last week to replace my previous one that was looking somewhat tired. There are obsessive-compulsive issues here; with her "sorting" not my "buying"!

Seguent Hycor was again applied to her eye lids from Thursday 31st October and apart from her dabbing her eyes with a tissue the following day only, no further problems have been noticed.

We had forgotten someone's birthday and days later I had her make a phone call, using the simple one button "speed dial" on her non screen phone. She did not seem to know what to say and had trouble hearing responses. I'll do that sort of thing myself in future rather than think the social contact good for her.