Chapter 566 - Just So Sad

Rather than knitting, she finds "mistakes" in knitted panels she thinks she has made long ago, yet I am sure the panels kept in a large plastic box are remnants that were to be thrown out when she was attending the respite group at Wild Dog. Some days ago she began sewing some of the panels together. One day I asked what she was making, as I saw that some panels were being joined into a tube, "A jumper" she said. Perhaps the tube was to become an arm piece? Next day she was unjoining the pieces, using a small pair of snipping scissors, shredding the wool into fibres and short lengths. Mess all over the floor, small piles of spaghetti like lumps, short lengths caught in the wheels of her wheel chair. She laboured in this manner one whole day, at other times most of an afternoon. She is intent on "fixing" or "making" something. I don't discourage her since such behaviour seems to be a replacement for damaging the floor and the like by "cleaning". Most mornings she participates in Dance for PD streaming sessions from her wheel chair and on Tuesdays the local Zoom'ed Dance 4 Wellbeing.

Selected notes from the past weekend

Friday 24th

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0830 Bad dyskinesia through breakfast, gave a bolus of 2.0

0845 To bed, dyskinesia continues, onto RHS, then back, then LHS, partly on front, then return to back, dyskinesia stopped.

0920 Seems asleep, no Exelon replacement yet.

0923 Laying mostly on back, legs slightly bent, head back, mouth open, breathing deeply.

0929 Touching face with L hand. R hand came up took L hand down, fingers of r hand flexing, L hand hard against face pressing hard.

0930 Awake, says feels awful, pain all over, insides "pulling".

0945 Up onto wheel chair, behaving normally, no dyskinesia.

Saturday 25th

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0915 Dyskinesia has been on going since 0830. Gave bolus 2.0

0930 Into bed on RHS, dyskinesia continues. Rubbed legs until dyskinesia stooped, radio on playing bland music, ate a chocolate, dozing.

1030 Awake, onto wheel chair.

Sunday 26th

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0730 Zombie-like sliding her onto the commode. Eyes wide open, mouth agape, tongue showing. Big piddle, onto pedal machine, a little more awake, not speaking or answering questions.

0745 Accepted water bottle and sipped.

0750 Zombie-like as Wild Dog carer arrived to shower and dress her. I decided to return her to bed. Severe dyskinesia stopped after placing on RHS and rubbing legs. Replaced the cassette and pump batteries (latter is usual procedure on Sundays)

0850 Still asleep, no dyskinesia.

0925 Waking, slightly dopey, onto commode, pump off, to bathroom, piddle.

0930 Under shower, Exelon patch off.

0940 Dressing, pump on.

0950 At breakfast.

1005 Exelon patch on.

1130 Pulling knitting apart. Severe dyskinesia.

1145 To toilet, wiped chewable calcium from chin and replaced shirt also dribbled upon, back onto wheel chair, denim jacket on, wanted toilet again. Seems distant and not fully aware.

1200 Transfer from wheel chair into car, very difficult to make her comfortable. On drive around to the cafe she decided she wanted nothing to eat (intention was for fish and chips), asked to drive past new houses. Stopped because she was uncomfortable again, she asked to go home.

1245 Onto bed on RHS, dyskinesias stopped after rubbing left leg for about a minute.

1250 Asleep

1300 Double checked cassette was full, flow rate 7.0, she hardly stirred.

1345 Awake no dyskinesia

1350 Transfer to the wheel chair, head "tingles", to toilet.

1410 Big turds in loo, return to wheel chair, started "knitting" again, asked for a can of lemonade.

1810 Wild Dog carer put her to bed. Cassette replaced, flushed tube, retaped and cleaned stoma.

1950 Heard her calling me, said she rang from her phone yet mine didn't chime, yet I tested both phones were OK. Her back was sore, some dyskinesia, rolled onto RHS and continued reading.

2055 Still reading

Today, Monday 27th

0615 Flow changed 2.8 to 7.0, MD 1.0, remained asleep.

0715 Awake

0730 transfer onto commode, awake and alert, FitBit off, Exelon patch off.

0800 Replace cassette while showering.

0840 Exelon patch on.

0900 Dance for PD session

1030 Mug of Milo and a Tim Tam. Returned to pulling knitted squares to bits.

1100 Continues ripping knitting apart.

And so continues an uneventful day following a stressful weekend.

Next time she becomes zombie-like I will administer a bolus dose. I am sure I have done so some time ago but looking back through the pages of my note books is too confusing and depressing.

Chapter 565 - Bad Habits

Each Sunday for lunch we call at the drive-thru bay at our local cafe for fish and chips which we eat down at the parking area near the weir and read novels. We both look forward to this escape from the mundane activities at home. I'm hoping we maintain enthusiasm for the lunch break for some time yet.

A day ago in attempting to "repair" a pair of her shoes she snipped the uppers until only the sole remained of one shoe. So this morning at 0930 I took her to Kmart before too many of the "unwashed" were about to buy shoes; 4 pairs actually plus a pair of knitted boot-like slippers. On the way in she saw a dressing gown which I was told to buy as a birthday present, not to be worn yet.

At month's beginning she developed a blueish pink spot on her left leg, some 15mm long. Initially I imagined she had knocked her leg during dyskinesia, but when it remained until this week I made an appointment to see the woman GP who thought the spot did not look like melanoma but gave us a referral to a visiting dermatologist but in a round about way suggested the male doctor in the practice has an interest in matters of the skin and has the appropriate equipment for looking at melanomas. The earliest appointment available for the dermatologist was 10th August so I accepted that and then made an appointment for the following day to see my GP. He doubted that the spot was a melanoma and took pictures of it with a mobile phone sized device with an external lens and light ring attached. He was most surprised at the temperature of her legs, commented that her circulation was bad and likely to result in amputations. When queried he only suggested extra socks. Back at home I placed her feet into a vibrating heated foot spa device born years ago for this same problem, but mostly unused since, This GP has been the first to take any notice of the condition. I wrote in this blog years ago about a temperature differential between her right and left legs and feet. I found on line a pair of boot-like slippers containing heating elements powered by a USB power source so are electrically safe; a pair of these have been shipped from places overseas, yet to arrive.

Although I suspect her dyskinesias are less this week I have yet to print out the FitBit charts. Perhaps I should monitor the temperature of her feet to see whether there is correspondence between temperature and dyskinesia but first I must check my IR temperature monitor because it reads in error, lower than actual.

I have been concerned that I may have upset one of the Wild Dog carers with unintentional racial speech, although exactly what I don't know but it can be so easy with voice inflection to give the wrong impression. I sent an email to the Wild Dog rostering person that my PWP missed the carer who we had asked, when possible, to come while I have what is now my regular Friday respite. This morning the carer came to shower and dress her. The carer had been away with 'flu like symptoms and in this season of plague, had taken herself to the hospital for COVID19 testing. She had been told to go away and not worry about testing, but the carer insisted by pointing out that she was in aged care. So I was very relieved to hear I had not been inconsiderate with off-colour humour and quite pleased that the carer was very professional in the way she had dealt with her own health issues.

Chapter 564 - A Pleasing Week

Each morning now I give her a Bolus dose of 2.0 around about 0715; too early around 0615 as I change the flow rate from 2.8 to 7.0 causes early alertness and a wish to get out of bed; too late around 0730 she is too unresponsive to be easily moved from bed to commode. Also I must be very careful not to wake her before 0730 so not to initiate dyskinesias. And my small phone, which sounds alarms to remind me of changes to be made, needs to be out in the kitchen ASAP to not disturb her. This morning the whole exercise worked perfectly from pump changes (Bolus at 0712) to having her use the pedals by 0750 when the Wild Dog carer arrived.

Each morning she is set up to do an archived session of Dance for PD but on Tuesday she participated in the locally Zoomed Dance 4 Wellbeing where she recognises familiar faces. One morning she became agitated that she was unable to stand behind a chair, as did participants of Dance for PD, so I placed her wheel chair in the sit-to-stand frame for some exercises, doing about 10 stands each day but did not yesterday and today because my lower back began experiencing sharp pains whenever I was slightly off vertical or stooped for something. She wanted to apply Voltaren to my back, so I let her do so and today my back is much better, although that may have something to do with my walking for an hour and a half along the new extension to the river walking path, to the far end at Riversdale on my 3 hour respite on Friday afternoon.

On Thursday she had her toenails clipped at the podiatrist. At that time her big toes were not painful even tough she frequently experiences pain seemingly in the joints of her big toes. She made a point of it to the carer this morning and lotion was rubbed into them. The blemish on the outer side of her left calf has not reduced, is perhaps a little wider today than when I took photos of it 8 days ago. I suggested that I take her to see Dr J this coming week and she readily agreed.

On the same day I sent a memory stick containing the video clips taken in the early hours one night in June demonstrating the effect of turning her in bed to stop dyskinesia, also about a week's worth of FitBit charts to her neurologist for comments. The male clinic nurse was disinterested in this material so comments may not be forthcoming. I detect non-responsiveness on their parts. Perhaps they have given up on her, maintain the status quo, the end of her journey is much closer now than its beginning.

A few days ago she began stitching together the knitted squares (I think these came from the Wild Dog group she attended a few years ago) but yesterday she began pulling the knitting undone, whether to change the size of some of them I don't know , she can't explain. This activity keeps her occupied for hours. She is at it now, has been for about an hour. Time passes; what does she think about as her fingers pick at the woolen thread?

Chapter 563 - Just Like Old Times

About 1970 when I worked at a steel company's research labs our group bought a PDP8S computer which filled some 4 standard rack spaces in a 6' rack plus panels in an adjacent rack for extended memory and peripherals. In those days the 8K of 12 bit words was impressive in a so called desk top computer. My job was to keep the system running, build peripherals and eventually install it all on a landing that overlooked a blast furnace hearth. Quite soon, and well before the system was relocated from the lab, I needed to repair a fault in the CPU hardware at least once or twice each day. Transistors on the CPU modules (of which there may have been about 50) began to fail. I quickly became very skilled at troubleshooting and repairing the PDP8S. In time, the challenge of repairing the CPU was no longer much fun or a challenge and I became somewhat stressed, especially when others began questioning my ability. After several months of ongoing problems and complaints by our management to DEC, the manufacturer and supplier of the equipment, I was given leave and the CPU was sent to DEC's office for repair. It remained there about 1 month before being sent back fully "repaired", although the workmanship on some of the modules was rather poor. No one ever told me, or our lab, what the cause of the problems had been. I had recovered reasonably well from the stress involved in the saga. At least a year later I was having a coffee with a sales rep from DEC in our lab's lunch room when he asked me "Did they ever tell you what was wrong with your PDP8S?" "No" I replied. Another research lab way up north in sugar cane country had also bought a PDP8S at the same time as our lab did and experienced the same problems with their machine as we had. Their repair approach was better than mine; they bought several hundreds of the two transistor types that were failing and a number of hardware people replaced all those transistors in their CPU during one weekend. Their machine was then reliable. The sales rep then told me that engineering support people in the USA plant where the machines were built investigated the matter, discovering that both machines (I never asked whether there were others) had been heat stress tested in a heat tent at temperatures exceeding specifications. During my career in DEC (I later joined the company) I experienced one other occasion when I came close to breaking point during the long saga of a failing system at a bank customer site way down south (in my then management role I had made the decisions that identified the technical cause; other management scrapped the system and lost the contract) and my escape was to volunteer my demotion to a position resolving technical problems albeit of short duration. On that occasion the customer's cleaning staff used very corrosive products. Now for a third time in my life I am experiencing a similar ongoing problem which cannot be resolved.

This morning I sent the following text as an email to her neurologist:

Dr ,

During Tele-health last Thursday evening I had insufficient time to discuss [Her] pump settings with you. Her current settings are Day Rate 7.0 Night Rate 2.8 Morning Dose 1.0 Bolus Dose 2.0.

A night rate greater than 3.0 seems to cause broken sleep, yelling out while asleep (loud enough to wake me wearing a CPAP mask) and dyskinesia in her legs, sometimes her hands as well. Bringing the night rate down in steps from 3.2 to 2.8 has reduced those effects but has decreased her alertness and lucidity on waking/being woken of a morning.

To clarify, our morning routine is for me to wake at 0600 and by about 0615 to set the Day Rate and the Morning Dose on the pump. Then by 0730 I assist [Her] onto her commode, move her into the bathroom where the commode pot is emptied then, still seated on the commode, [She] is placed at a set of powered pedals to rhythmically exercise her legs for up to 20 minutes until a carer from Wild Dog arrives about 0750 to shower and dress [Her]. [She] is then transferred onto her wheelchair to have her breakfast.

As the Night Rate has been reduced [She] has become less lucid, less awake by, say, 0750 and sometimes asks to be returned to bed either before or after showering. She will then remain asleep in bed for up to an hour. In my estimation [Her] legs seem "stiffer" of a morning.

This morning at 0545 I was woken by [Her] vigorous dyskinesias rattling the guard rails of her bed. I changed the pump from Night Rate 2.8 to Day Rate 7.0 and gave a Morning Dose 1.0. I rolled [Her] fully onto her RHS and the dyskinesias faded immediately and by 0600 had ceased. There were no dyskinesias at 0615. When I checked on her at 0700 only her feet were moving with small but fast dyskinesias so I initiated a Bolus of 2.0. At 0725 her leg dyskinesias were quite vigorous. As I transferred her from bed to the commode she was somewhat sleepy, but more alert than previous mornings, able to tell me what day it was but not the date. There were no problems having her use the pedals. There were no difficulties for the carer to shower and dress her.

An example of [Her] OCD behavior occurred yesterday afternoon when, still seated in her wheelchair, I found her attempting to remove the waist band from the slacks she had removed because the band was on "back to front". A considerable amount of persuasion was needed to convince her otherwise and help her back into the slacks.

For your interest I will post a memory stick containing video clips taken early in June  and FitBit charts taken more recently. For quite some time the FitBit had not been attached to [Her] right leg because it had been bothering her but a better method of attachment is now used and is acceptable to her.

[Your secretary] has made an appointment in February  2020 for [Her] to undergo a Nerve Conduction Study and see you. We will cancel the appointment should there be any hint of COVID issues around that time.

Regards, 

So now I feel somewhat relieved that portion my burden has been communicated.