Chapter 562 - Just Depressed

"I'm well", she said in response to the Wild Dog Carer nurse asking how she was. I had just found her phone for her (it had been hanging from the monkey bar above her bed) expecting the nurse to make the scheduled call at 1100. The nurse has a bright cheery voice, almost child-like, and I like to think their 30 minute chat is good for her, although I have no idea what they talk about. During the past week a close relative rang her and when I later asked what was said, assuming there must have been some family gossip, the reply was "Nothing", before remembering that mention was made of a grandchild's wedding being over and done with; she had no idea who that was.

Saying "I'm well" is a social courtesy and she may not remember this morning's beginning. At 0615 I set the pump to its day rate and took her phone from its cradle, making it chime, and her feet began to kick, then slowed to a stop. By 0715 after I had exercised, showered and dressed her legs were very dyskinetic as I slid her from bed onto the commode. and wheeled her into the bathroom. I removed her overnight incontinence pants and pad, quite full of piddle. Her nightie, wet from pants leakage, was replaced as was the thin absorbent sheet over the main absorbent washable "bluey" on her bed. I wheeled her out to place her feet on the pedal machine but the dyskinetia was so bad she just wanted to place her legs up onto a lounge chair; her legs were aching and her right arm was "asleep" and tingling. Her face expressed sheer misery. The Wild Dog Carer was due to arrive to shower her. "Do you want to go back to bed?" "Yes" she said. So a clean pair of incontinence pants were threaded onto her legs and using the multi-gripped belt I lifted her back onto the bed, then rolled her back and forth to pull up the pants and had her settled but still dyskinetic as the Carer arrived. By this time her hair was in rat tails from sweat. I told the Carer she need not stay; I would shower her later. During these COVID days the Carers check our temperatures with a non-contact thermometer. The Carer was puzzled that her temperature was less than mine when she was sweaty because she was so hot. I tried to explain that those non-contact devices check surface temperatures and in this case the sweat would be cooling the skin; an in-ear measurement using the device we have in the cupboard would be accurate; my stuffy techo explanation was not understood. By now it was 0800, and after rolling her from her back onto her RHS, then onto her back again then onto her LHS the dyskinesia came to a halt. Then she said she was "cold" so I covered her with bed clothes, the dyskinesia began again, eventually stopping at 0815 after I rubbed her legs for several minutes and she slept. She woke at 0835 without dyskinesia. I left her quietly in bed and at 0845 I used the small slider board to move her back onto the commode where she pooped into the pan once I had returned her to the bath room. I left her on the commode to shower herself, returning to help her dry before taking her back to the bedroom to dress in clean incontinence pants and pad. By 0930 the pump was re-fitted, the FitBit (began attaching this again a few days ago) was around her right ankle then to breakfast. After which she was in her sewing room sorting things and scraping the carpet again.

So at 1100 this morning she was "well". I'm stuffed.

Have I ever mentioned that procrastinating about writing this blog tears the guts out of me, depresses me but having written, I am relieved, almost as if I have been badly constipated. The relief is almost exhilarating.

She cannot be tempted to "play" with the games I bought, hoping to keep her alert and active, away from repeatedly reorganising things in the sewing room, reorganising magazines and books in the TV room, scratching the timber floor, scraping carpet in the sewing room, pulling leaves from the large Peace Lily and replanting them in the same pot to grow by themselves. I used to leave the clothes newly washed in baskets in the bedroom for her to sort and hang until I realised the chore stressed her too much; that it was an all day job for her was unimportant.

On either Saturday or Sunday each week now I have driven to the local cafe for fish and chips at their drive through facility, and then find a park where we can eat. Last Saturday , about to drive home from the park at the weir, the car failed to start. Thirty minutes later, with a new battery fitted and $273 charged to a credit card, we left for home. An expensive lunch. But an outing for both of us; she reading a Mills & Boon romance and me reading the expose by John Bolton (who I dislike) about that idiot in the White House. Don't get me started!!!

Chapter 561 - Caught In The Act

This morning I received an email from PMD Alliance to view the YouTube recording of Prof/Dr Simon Lewis speaking recently on the latest research for freezing of gait, patient advocacy and identifying unmet needs, all excellent PD topics, except of course my PWP has no problem with gait since she is unable to walk anymore. Simon Lewis is one of those down-to-earth blokes who can wear a suit without becoming a puffed up academic. Years ago in Hot Air City we attended a PD seminar at which he spoke; before the speaking began Simon toured the over filled room, speaking to people at random, including my PWP. I had the feeling he chose to speak to her, perhaps partly because she was in a wheel chair, but more because he empathised with her about her condition. I have since wondered the outcome had she been a patient of his.

Anyway, after watching some minutes of Simon Lewis' presentation, I paused it to check on her. I was horrified to find her backed into our kitchen alcove, the pantry door open, a large carving knife in her hand and heaps of dark brown stuff on the floor. As I noticed a plastic Tuppaware container full of the stuff, I realised I was looking at brown sugar, not poop. "Where did it come from?" I asked; she said "Beneath the 'fridge." She was very subdued, child-like, caught in the act of a misdemeanor. I asked her to stay where she was until I swept the sugar into a heap and then into the dust pan. On tipping the pan contents into the bin I noticed the cellophane packet that had contained the sugar.

To keep her attention away from the pantry I suggested some Meccano (the stock car we made together had been disassembled days ago) but she was disinterested; "How about some Leggo?" but the same reaction. I pulled out the boxes of drawers bought to put the Leggo pieces into, suggesting the pieces might be sorted into colours, sizes and shapes. That activity has grabbed her attention, she is still at it 2 1/2 hours later, having allowed a mug of Milo to grow cold in the process.

A few days ago I ordered a considerable number of magnetic plastic shapes (well the plastic is not magnetic of course, there must be ferrite particles within). To my horror, I discovered I had bought such things before, maybe a few months ago, and she had stored them in the cupboard along with Leggo and other game objects. I found some plastic Leggo containers full of the torn apart Leggo cardboard boxes which I do remember attempting to stop her tearing apart months ago. I threw out the cardboard pieces, she no longer wished to keep them.

Did I describe the days about a week ago when most mornings she needed to return to bed after showering, and one morning I sent the Wild Dog Carer away and showered her later myself? The night I videoed her dyskinesia, turning her in bed, missing a text message for a tele-health consultation with the neurologist? I'm not up to checking my recent blogs posts just now so I'll force myself to return to the subject later. Bursts of dyskinesia last night at 0230, 0435 and 0500 were "stopped" by rotating her using the new Slide and Turn sheet which arrived from Pelican a few days ago.

Chapter 560 - Responses to Cries in the Wilderness

Perhaps my age makes me uncomfortable when I attempt to express my ideas, my concerns, my observations over the phone. I usually feel that the other party does not comprehend my words, my emotions, my ideas as I attempt to describe a situation or make a point; and after the conversation ends I fear that I may have omitted a key detail to assist the hearer's understanding and that stresses me not knowing. So instead I much prefer to use the written word so that I then feel we, myself and my correspondent, have the same information for further debate or action.

So for about an hour and a half  on Thursday morning I wrote the following email, here edited to remove identification, to her neurologist and clinic nurse up in Big Smoke.

Her current Duodopa flow rates are: Day 7.0 Night 3.2 Morning Dose 1.0 Bolus 2.0

The night rate was increased from 3.0 to 3.1 to 3.2 because from around 0300 She was waking with vigorous dyskinesia and vocalising while asleep. Now she is waking with dyskinesia between 0500 and 0600, usually complaining that her legs are stiff. In checking my notes I see that I had earlier increased the night rate in steps to 3.3 for the same reason before returning it to 3.0 because her condition was worse. Now I seem to repeating my previous steps; disturbed sleep is getting to me.

Beginning in early May She sometimes began asking to return to bed with leg dyskinesias after showering at 0800, then waking around 0900 without dyskinesia and quite "normal". Several times she has asked to return to bed in the early afternoon with dyskinesia and wakes after about an hour asleep without dyskinesia. Each afternoon, by at least 1600, she asks to have her feet raised onto a lounge chair because her feet and legs feel "very tight and stiff" and usually are dyskinetic as well.

Beginning in early May by early evening She was becoming increasingly stressed with dyskinesia and stiffness so Wild Dog Care was requested to assist putting her to bed at 1800 rather than 1900 each evening.

As I mentioned at our last visit, I accidentally found that Her  dyskinesias stopped when she was turned onto her right side. Now I may need to turn her onto her left side, or even return her onto her back, to stop dyskinesias and I'm beginning to suspect that a change in body position is not as effective as it once was.

I made a serious mistake on Saturday 30th May when I forgot to replace the Duodopa cassette. That morning I was woken at 0340 by Her vigorous dyskinesias rattling the safety rails of her bed. Since she had been on her right side, I rotated her to her left side, the dyskinesias stopped and after 5 minutes she was asleep. At 0520 I needed to roll her onto her back to stop dyskinesias. I changed the flow rate from 3.1 to 7.0 at 0545 but because she was quiet I chose not to disturb her further so I did not replace the Duodopa cassette or flush the side port, intending to do those later. After breakfast She did a Dance for PD session and then because of the pleasant sunny morning I pushed her in her wheel chair along the local river pathway for an hour. On the way home we bought fish and chips for lunch at our local cafe with take-away access. She ate 2 pieces of fish and most of her chips. At 1615 she declared she felt like "walking", so I placed her wheel chair in position so she was able to use the pedal machine. At 1700 I found her asleep, pedals had stopped, and on trying to wake her she opened her eyes and giggled. I gave her some ice cream, she ate some then fell asleep. At 1720 I checked the pump setting was 7.0 and when I took the carrier bag off the pump I found the cassette empty. I replaced the cassette and on restarting the pump gave her a bolus of 2.0. At 1750 she ate cheese cake and ice cream. Shortly after 1800 she was in bed reading a book until 2000 after which there were  sudden short bursts of dyskinesia at 2100 and 2200.

The Exelon patch continues to be replaced daily.

I will be thankful for any advice that may help alleviate Her suffering the effects of dyskinesia. 

Almost immediately an automated response from the clinic nurse told me she was away on extended leave.

Friday morning I rang the 1800 number for the state PD association in Big Smoke, asking to speak to a counsellor. I was directed to a nurse which I didn't mind at all; I just needed to discuss our situation with any empathetic person with an understanding of PD, especially the practical issues involved and in our case, long term implications ; C was just the person. I think we spoke for well over an hour and by the end I could detect the subtle cues that I had spoken enough. I can't remember hearing any specific actions I needed to do yet I was satisfied that our conversation was positive and helpful.

No sooner had I hung up before the phone rang again; another clinic nurse rang from West Beer hospital. I presume he had read my email of the day before or had been asked by the neurologist to contact me. He thought the duodopa pump settings were wrong, that Bolus doses should stop the dyskinesia, he asked me to describe the dyskinesia in terms of speed, irregularity, rhythm. I tried unsuccessfully perhaps to do so and said I will video the bouts of dyskinesia to send to him but he doesn't want me to do that. I suspected that he may have been able to draw conclusions from the nature of her leg kickings  and I thought to myself, but did not say "Shit mate I have only one patient whose legs kick slowly or rapidly, sometimes in larger or smaller motions, sometimes small or high speed "tremors" just in her feet and if you can't understand me without interrupting I will become upset. You see many PD sufferers and I can't appreciate the finer points of what you ask." Fortunately, knowing that help will not come my way if I express my feelings, I did not speak my mind. At the conclusion of our conversation I was unsure whether I agreed to any specific actions so last night I set up a video camera and a tablet as a clock face to record dyskinesia events although last night was not nearly as bad as previous nights this week. One thing the clinic nurse suggested was admitting her to West Beer hospital for observation and medication adjustments; something I have not repeated to her because I know her immediate reaction will be to refuse to go, especially in this plague season. Some months ago when I mentioned this to the neurologist he was not keen on the idea.

The games mentioned in my last post were ordered after discussions in a couple of Dementia meetings on Zoom. Another arrived this week; Tangrams. The game I ordered is in a spiral wrapped book form, the cover of which is magnetic as are each of the seven playing pieces, making it ideal for the pieces to be positioned by someone who lacks fine movement hand skills. Also included are diagrams of the shapes to be formed, hundreds of them, plus answers. Trivial to make the shapes I thought (being quite good at a similar game on Lumosity) but Tangrams is decidedly difficult and I'm afraid she does not comprehend what is required; she seems unable to  understand that a copy of a small black diagram needs to be made by positioning larger coloured pieces. Arriving the same day was a bucket of Meccano pieces which has attracted her attention, in that she spent several hours yesterday sorting and counting the various shapes, nuts, bolts and other bits, although without assembling anything.

As I write she is sorting through knitting and crocheting magazines to give to the Wild Dog Carer who looked after her on Friday afternoon while I photographed some old house ruins with my new camera. Unfortunately she rips out of the magazines patterns she thinks useful for the Carer who has never knitted but is keen to learn. I sent an email to Wild Dog hoping to have the same Carer be with her each Friday afternoon for 3 hours which I have decided to make my respite time devoted to photography.

This week she has caused some damage. The pedal machine had been glued to a sheet of MDF until she decided to move it. The machine is now screwed to the MDF after the soft plastic feet and excess dried glue were removed. One morning I found the long pivoted mirror (the type ladies like to check themselves in when going out) moved from its usual position and on repositioning it I noticed 2 screws had been torn from the timber frame at the pivot on each side. When I asked her what had happened she said the mirror was "warped" and became difficult to position. The mirror is now out of further harm's way while I figure out what to do about the pivots. She had scraped white paint and timber chips from the skirting board where it forms a corner opposite the bathroom door. Yesterday I suddenly came upon her as she was about to cut the sleeves off the blouse she had been wearing; she said she wanted short sleeves rather than long ones. I managed to discourage her doing so and helped put the blouse back on. I suspect that blouse's life is threatened , as are other blouses with long sleeves.

In regard to her dyskinesia, I am pondering whether regular turning while she is in bed and regular bouts on the pedal machine during the day may be useful for minimising the problem. She seems unable to understand what I am getting at and difficulty voicing how her body feels at dyskinesia onset, other than saying "tight" or "stiff" which suggests lack of medication even though an increase in medication, a a 2.0 ml bolus dose, is ineffective.