Chapter 532 - A Hard Week

Existing has become much more difficult of late; not so much problems in our way, just coping with the stuff of living. Last Sunday we shopped at Target, buying a quantity of discounted slacks and tops for her. Pushing her wheel chair around Target tired me out so that I suggested having lunch at KFC as we passed the place. I bought a family lunch, bloating ourselves. She surprised me eating so much. Even so, there was some left over and taken home in a bag but reheated in the evening was not appetising to either of us so was tossed out. We continued on from KFC to the Reject Shop where she bought several large balls of black wool which she has been knitting into two panels for some purpose. Later at home she began pulling threads at the leg bottoms of the slacks she was wearing to "shorten the cuffs". Several pairs have been wrecked by doing so. Stress and bad dyskinesias in the evening may have been due to eating too much chicken.

The following morning, Monday, I was surprised that in turning off the Duodopa pump at 0620 in order to change the cassette the pump was actually turned on, indicating that it had been stopped sometime during the night. Later, by weighing the cassette, although not very accurately, I calculated that the pump had been turned off about 0100. She was very sleepy, feet up, dyskinesias during the morning. At 1220 I discovered her pushing pieces of our large Peace Lily back into its pot after having "tidied it up a bit". Her hands were covered in soil as was the floor around the pot after she had broken off segments, including the only one with a flower, and replanted them. The plant is drooping and bedraggled ever since. She seems fascinated by inserting her fingers into loose soil. Later, when I went to the doctor's for a script for Prolia for myself, afterwards returning to have the injection, I took her with me in the car for safety, although she had no wish to go.

Our town was covered in snow on Tuesday although we had no trouble attending her Dance for Wellbeing. Mid-afternoon she called me from the floor of her sewing room.She had slipped off the wheelchair seat, which was tilted forwards, onto the floor without hurting herself. With some difficulty, I was able to ease her onto a foot stool and from there she was able to stand into the Sara Steady then back into the wheelchair.

Wild Dog provided transport for us to the private hospital at the Highlands town where she had eye operations. We left at 0700, arriving some 30 minutes early for admission by 0900. After cataract and glaucoma operations she was in recovery at midday, remaining there until 1600 when bandaging was removed. Apart from two black eyes, as expected, all was satisfactory. We then went down the street to the ophthalmologist's rooms where he found all was well and measured her eye pressures at 17. After paying a small ransom, we went home, arriving about 1815. Unfortunately, we left without any eye shields. Next day I was unable to find any to buy at several chemists or at our optometrist. However I bought some "paper" coffee cups with lids, the lids serving as reasonable protection while she is asleep. I found that the edges could be rolled back to provide a smooth surface to rest on her face. At one chemist I was puzzled when a young girl asked me whether I was "tech savvy" which seemed to mean "computer literate" so I told her I had 5 computers at home and that if she was referring to buying on line then delivery time would be at least a day or two. I suppose she was trying to be helpful because of my white hair and beard and I presumed she was probably not born  when I retired from the industry.

There has been no pain or itchiness about her eyes. She continues to wear sunglasses while awake and can read smallish print. She is knitting the black balls of wool bought last weekend.

Of note are the changes in her bowel motions since beginning the Exelon patches, now for longer than a month. Rather than passing droppings like sheep or rabbits do, she passes enormous stools. If Exelon is producing this effect it will be due to neurological-muscular issues rather than digestive ones.

My left heel became very sore yesterday afternoon, so much so that I was almost unable to walk. Some pain relief cream on it and sleep lessened the pain by this morning. After walking around the house this morning and hanging out some washing I now have to be careful when standing.

Chapter 531 - A Month of Exelon

After four weeks on the Exelon patches her neurologist had asked me to phone the clinic nurse at West Beer Hospital to be given further instructions, I suppose if problems have occurred. Documentation suggests the Exelon 5 patch may only be the introductory dosage. Because I find giving technical details by phone somewhat error prone, I sent an email with comments, quickly receiving an automated response to say the nurse was on leave until month's end and to ring the given number on the email. I must do this on Monday. Below is the list of redacted comments from my email.

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1. The first Exelon patch was applied on Friday 16 Aug when her Duodopa flow rates were at 7.0/2.0 . No changes have been made.

2. During the first few days [She] was stressed with wild dyskinesias and had bursts of sleep of up to an hour although these had occurred prior to Exelon. On 22 August I took her to our GP Dr J who was able to observe [Her] fall asleep and declared that the event was just that, Pam had fallen asleep and her BP, pulse and breathing were normal as expected. [Her] bouts of sleep still occur, perhaps less frequently.

3. Probably because [She]  tends to be hot and has sweaty skin, the Exelon patches tended to partially lift, once one actually fell off, so I have been placing two pieces of tape across a patch. The patches are moved from left and right upper arms, chest and shoulders each morning about 0830 after showering and dressing.

4. [She]  says she feels "better" since beginning the patches. I think she is less stressed this past month. My FitBit traces from her right leg show that on some days dyskinesias are minimal, on other days quite vigorous, so probably minimal improvement.

5. Dr F warned us of Nausea/Tummy Upset, Drowsiness, Confusion, Dizzy Spells/Blackouts, Severe Tummy Pain. None of these have occurred unless some of the sleep incidents are included that are of short duration, maybe 5 minutes or so, since these may not always be noticed since she is in a wheel chair all day.

6. [She]  continues being compulsive about sorting items, cleaning spots unnecessarily and sewing projects by hand without completing any.

7. After going to bed at about 1915 each night [She] will usually read novels on an eBook reader for at least 3 hours,

8. [She]  is scheduled to undergo cataract and glaucoma procedures at B on Wednesday 18th September.

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She has commented that the dyskinesias "feel" different and her toes are painful. Last night when the Wild Dog Carer and I were preparing her for bed she complained of pain in the toes of her right foot. Thinking that her foot was not properly fitted into the show, I removed the shoe and then replaced it. On removing the shoe again, I saw blood on one of the toes and then noticed a small sewing needle embedded in the side of the toe, which was quickly removed and a band aid applied. The needle would have fallen into the shoe while she had been pinning and sewing the same quilt she has been working on for at least two weeks. Much of her time is spent collecting pins and needles from the floor, dropped or spilled there. I often find pins and needles on the seat of her wheel chair after I have transferred her onto the toilet, and expected to extract same from her bottom, not her foot.

After some lunch at the soldier's club on Thursday she wished to go to her favourite cheap shop where she saw wooden clothes hangers, realising she needed two packs of six, then spools of crochet cotton and rolls of ribbon with which to pad and decorate to hangers. We left after buying $35 worth, All these items are now forgotten in her sewing room as she concentrates on the never ending quilt project which for ever remains at the pin-together stage.

I attempt to encourage her to complete the paper cup finger holding exercises advised by the physio. She thinks she is able to do the exercise, but in my opinion very poorly, and only when I hand her the cup and then not for any length of time. She does not attempt any exercise of her own volition.

She has been asleep with feet up. I see on the Echo Spot that she has woken, so I will see whether she wishes to spend some time down the street, perhaps lunch.

Chapter 530 - Sunday Morning Asleep

She will wake soon. After I fitted the Exelon patch this morning, shortly after 0900, she needed her feet up and went to sleep. A little later she wished to lay down so I slid her from her wheel chair to her bed where she remains asleep at 1030 as I type this saddening story.

I took her to her first appointment at the physio place where we were discouraged about lack of interest in her left foot as the "drop foot" became permanent. But that is where the GP referred her and I didn't protest after our unsatisfactory visit to the complex at the edge of town, perhaps a year ago now. A young male physio examined her feet, did not think massage was appropriate (she remembered the "massage" attempted by the woman that had hopes of becoming a PD nurse, now that was years ago, I had forgotten), and decided to concentrate on her hands after she mentioned tingling and numbness in her fingers and that her interests involved sewing. So he had her do some finger exercises while holding a disposable coffee cup, suggesting she performs this exercise several times each day for about 10 minutes and return to him sometime after her glaucoma and cataract  operations due on 18th September. We were pleased with his interest and attention. After the physio we had afternoon tea at the Soldier's, her first time down the street in quite awhile.

She did not fall asleep before or during her attendance at Dance for Wellbeing last Tuesday . We did not linger afterwards because I had contracted a disease (my annual dose of Man Flu) probably after meeting with the Sisters for lunch at the Club up the 4 lane on the Friday before.

More work has been done on her quilt, a repeat of what was undone some weeks ago, pinning lacy edges around the square of fabric. One day in attempting to use the sewing machine the dogs were lowered so in an endeavour to "fix" the problem, the end cover of the machine was removed. I just entered the room in time to find an internal spring and  screw removed, although I suspect these may have fallen out when she removed the cover.

Each evening in bed she reads part of a Betty Neal novel on the eBook reader supported on a flexible arm over her bed. She slowly works her way through these novels although I suspect she may re-read portions many times over. Lately she is still reading well after I have put my eBook away and gone to sleep.

In an attempt to monitor her while I am out of the room, I bought two Echo Spot devices (Amazon) and after discovering that our Prime subscription also provided music as well as movies I added an Echo Dot just for music to the collection of consumer gimmicks. One Echo Spot is now mounted,  using an adjustable arm with quantities of duct tape, upon her wheel chair so no matter where she is I can monitor her well being. The other Echo Spot sits next to my keyboard so while I'm here in my dungeon she can see me as well. The application installed on my mobile phone allows me to check on her from anywhere else I may be. I thought she may object to such close monitoring but she doesn't seem bothered about it. We both should be bothered now that the operatives at Big Brother Amazon are able to watch and listen to us.

She doesn't think the Exelon patches are helping her. One of the side effects is drowsiness and I suspect that is calming her. Her bouts of sleep do not occur every day so may not be impacted by the patches.