Progression Two

Occasional notes in the life of a Parkinson patient & her carer.

Sunday, August 30, 2020

Chapter 569 - All Twisted

 That's what she said, having partially finished breakfast at 0850, "I'm all twisted". Usual pump adjustments a little after 0600 when she did not fully wake, some dyskinesia came and then stopped. At 0730 I woke her to move her onto the commode then into the bathroom. She was slightly "dopey", mild dydkinesia, then onto the pedals until the Carer arrived, who hadn't been through our normal morning procedure so I gave instructions. This carer was the one that arrived the Sunday before last to see her in zombie mode.

Anyway, this morning during breakfast she was unable to position her dyskinetic legs comfortable, either up on the recliner, or hanging down, shoes on or off. She said "I want to lay down". I didn't debate whether on the wheel chair in reclined position or on her bed; I took her straight to bed where I positioned her on her RHS and covered with a blanket. After awhile the dyskinesia eased to nothing and she dozed by 0905. At 0940 she woke, needing the loo, very big stool, then out to finish some of her breakfast. She wasn't feeling any better.

Since my previous post I have been poorly, very tired, stressed and depressed. Perhaps initiated by corruption of my email account, probably due to my inattention to accumulating junk mail, in total over 30,000 messages at least 75% of which was unread. In the past year or so I have paid little attention to house-keeping. I was able to re-establish a working account on another machine. I lashed out buying another machine from my mate Bill, partly as a stimulant I suppose. The new machine is now in use, responding much better than the older constipated one which I will clean of unwanted software. As my technical problems decreased I began feeling better but with a way to go yet. Sunny spring weather has helped, allowing me to sit outside reading and listening to lectures. On last Friday during my respite period I called into the government place which handles driving licences to hand in my doctor's health check on me, even though he had submitted the data on line as well. He said things sometimes get lost so it's better to hand in the paper work as well. Well, I'm so glad I did because the woman who served me said I needed to take a driving test. "But I'm not 80 yet!" I exploded. "For this grade of licence a driving test is required at 80" she explained. Way back in 1996 or 7 when we lived in the desert country in the middle of the continent I had driven a 20 seater bus around the suburban streets which qualified me to drive said bus to and from an institution 25 kms out of town, and my licence was suitably endorsed. We now live 3 states away after that period in the centre and I feel sure sometime in changing state driving licences I had cancelled my licence endorsement to drive a small bus. The last thing I wanted was the stress and cost of passing an unwanted driving qualification, although I didn't tell the woman that, just that I didn't need such an endorsement on my licence, so she crossed out a few items on the form, gave me a receipt to cover me until a new licence was mailed to me, perhaps within two weeks. My licence renewal is due 2 days after my 80th birthday. It is not obvious to me on the form ( I had made a copy of it) that I had to take a driving test.

There are a few of her activities in the past fortnight I could describe but I will only mention one. During my respite on Friday she helped the Carer to learn to knit, although the difficulty was casting on rather than knitting as such. When I returned home the Carer had knitted quite a few inches whereas she had only cast on and was having problems with the first or second row; seemed to have a problem with a knot, which she had begun to pick at and the ball of wool was in a tangle on the floor . She continued yesterday, spending quite a few hours, morning and afternoon, pulling at the fibres in the strand of yarn, tearing small pieces away and making a heap on her table. When I asked why she did this she mumbled and continued with the pointless task. I left her to continue doing what was obviously of interest to her.

Addendum:

About 1145, although her legs were mildly dyskinetic, I asked whether she would like to go for what has become our Sunday lunch of fish and chips. She wanted to go. In the queue at the drive through the car was rocking in time with her dyskinetics. Down at the Weir they worsened so I decided we should go home, only a few minutes away. Our two slices of Mars Bar cheese cake, in a polystyrene box slid off the dash as I turned the corner onto the street; without damage fortunately. At home she ate one piece of fish and a few chips as well as two slices of lemon. In recent times she has taken a liking for lemon, eating all the flesh leaving just the skin. Her other piece of fish is in the fridge for her. She is now eating the cheese cake.The dyskinesia has lessened. I may take her out into the sunshine, no point in wasting it.

Sunday, August 16, 2020

Chapter 568 - An Often Forgotten Anniversary

 Today, Sunday 16th August 2020 is the 61st anniversary of that Sunday morning when, in long ago 1959, I waited at the top of the front steps of Auburn Baptist Church for her. As she came level with me I asked "Can I sit with you this morning?" and as the saying goes, "The rest is history." Actually, history began the evening before as I waited with a group of teenagers gathered to catch the train into the City to attend BYF, when she, the last to arrive, came stomping down the pedestrian ramp, hair flying, rope petticoat maintaining a hoop of skirt way out from her legs, high heels. You do remember how teenagers dressed in those days, don't you? Most years August has long gone before I remember these dates, especially the 22nd, when I took her to see "South Pacific". Along with COVID reports, news broadcasts have frequently mentioned the cessation of WWII in the Pacific this weekend, and this reminded me to check the dates of personally more important events.

I have not bothered to attach the FitBit to her right leg for quite a few days now. In a way I wish I had, for her dyskinesias seem to have lessened. And our moods have changed, hers and mine, perhaps we are duller, more irritable.

This morning another "event" occurred so once again I will be lazy and simply transcribe my notes.

0615    Pump flow rate increased from 2.8 to 7.0 and morning dose 1.0. She remained asleep. laying on her back.

0730    Breathing OK, mouth open, lying on her back.

0735    Unable to wake her. Raised head of bed, dyskinesia of legs began, mouth open.

0740    Oximeter 94% and pulse 82 (?). 

0750    Wild Dog Carer here. Wrist BP monitor on left 167/99 Pulse 180. Dyskinesia vigorous. Hot and sweaty. Temperature on forehead 36C.

0800    Omron BP  monitor 142/62 Pulse 99; 136/69 101, vigorous leg dyskinesia.

0816    Vigorous leg dyskinesias.

0818    Eyes now open, had been closed, pupils wide. eyes follow me.

0819    Pupils close as torch moved across her face.

0821    Her knees bent upwards then down again, her right hand moved. She does not respond to my voice and eyes do not look at me. About now the Carer left.

0827    Dyskinesia continues, knees up, eye lids blink, eyes follow me sometimes. Feels hot and sweaty. Omron 128/31 86. Remains staring and pupils wide. Oximeter 95% 103.

0832    Awake so gave her a sip of water. She said "Hot". She coughed and asked for "toilet".

0833    Omron 128/57 106.

0839    Slid her from bed to commode then to bathroom. I asked "Piddle?" "No", "Poop?" "Yes".

0843    Enormous turd in the commode pot. I took 2 pictures of it. Remains on the commode.

0845    Responds slowly to my questions, saying she is comfortable on the commode, says she will shower but she looks dopey, so I decided to leave her on the commode while I had some breakfast as I felt the need of energy.

0852    Gave her a bottle of water, remains on the commode.

0908    Pump off. Shower then returned to bedroom on the commode. Dressed her. Says fingers of right hand "feel funny" and do not flex very well, then said right hand "is burning". She does not remember the Wild Dog Carer being here.

0930    Dressed and in back room at the TV. Pump cassette replaced, pump batteries replaced.

1015    Has had fruit juice, diced fruit and two crumpets topped with cheese. Complained of both arms being "dry" as she rubbed them so Sorbolene was applied.

The time is now 1155, she has been cleaning the "feet" on the bottom of the step stool I often use to reach upper shelves in our cupboards. I said "OK Dear, I'll take you out to have a mushroom pie for lunch". "Why do we need to go out?" "To celebrate our Anniversary." She smiled.


Sunday, August 09, 2020

Chapter 567 - When My Fear Becomes My Experience

 Yesterday's Coles order was the second for which their "Little Books" collection was available and with yesterday's I bought the box in which to mount the books. She remembered I had said the new ones had arrived, I had forgotten, so after helping her unwrap the box of its cellophane I left her sort and slot away the books. I doubt she will read any. The type of activity in which she is content to immerse all her attention, as evidenced by her sorting the CD and DVD collections again, although that was initiated by my finding a spiritual song CD left in the player for which the cover can't be found.

The past week was one at our new normal status in our ever changing downhill slide. Except for yesterday, a step change. I will just type my notes for Saturday 8th of May.

0600 Mild continuous dyskinesia, 2.8 night rate to 7.0 day rate, morning dose 1.0. Has been on right side, legs pulled up,  continued, remains asleep. Rolled her onto left side, eyes opened, no comprehension, I straightened her legs, rubbing her upper leg and arm until dyskinesia stopped and seems asleep.

0630 Remains asleep.

0730 Vigorous dyskinesia had started some time earlier, unable to wake her, seems in a "zombie" state. Eyes open, staring, irises large. Gave a Bolus of 2.0 from the pump. I sat her upright on the bed then slid her onto the commode and removed the FitBit from her right leg. Then into the bathroom, removed her incontinence pants with some difficulty. Dyskinesia continued, she remained unresponsive, not answering questions, eyes open, irises big.

0735 Dyskinesia slowing, no response to questions, sitting upright on commode.

0740 Eyes open, has done some piddle in the pot, has not spoken yet, dyskinesia continues, eyes closed.

0750 Eyes open again, hands move, not responding to questions.

0810 Wild dog carer helped me get her back into bed, new incontinence pants on, not responsive, laying on back.

0820 Still asleep, replaced the cassette, flushed the side port and cleaned the stoma.

0830 Has been quite still but now beginning to move her head a little. Unresponsive.

0910 No dyskinesia, maybe waking, moves head slightly, not responsive to my voice.

0935 Awake, no dyskinesia, speaks to me. Irises small.

0945 Under shower seated on commode

1015 Dressed her then transferred to wheelchair. Normal breakfast of fruit juice with Benefiber, diced fruit, a crumpet with melted cheese.

Then followed a "normal" day. During the events described above her breathing was normal, not gasping, fast or shallow. Her temperature (Wild Dog carers check during every visit) was normal.

During this past week she has shown less interest in things, perhaps more reserved than usual, continues to pick up bits on the floor ( I should sweep more often), is often found trying to remove small threads caught in the wheels of the wheelchair (sometimes they are there) and what she perceives as marks on the floor.

The episode described above is the longest of the periods when she has been unresponsive. I had told the Wild Dog carer, who volunteered to return later that morning, after helping me get her back to bed that I would call the ambulance if she was in the same condition by 10AM. I only now remember that I didn't think to take her blood pressure, pulse or use the oximeter that arrived last week (a toy, bought in case of COVID infection).