Chapter 444 - Blood Tests and Another PD Clinic

The results of the 12 blood tests requested by our GP resulted in only one anomaly, and that for cholesterol, for which he intended to prescribe Lipitor until I told him some years previously she had muscular pains in her arms due to Lipitor. In looking at the results myself, there are other parameters outside reference ranges which the GP perhaps considers acceptable. He referred her to a doctor in Hot Air City to investigate whether she has problems other than PD that may cause her to feel she needs to defecate yet is unable to do so. I think I have previously mentioned that she sometimes has a bowel motion without knowing she has done so; this only when on the loo or commode, she has never messed herself. She continues to lose weight.

At 0600 last Wednesday Wild Dog drove us to the Vets Hospital in Big Smoke for appointments with PD allied health professionals, OT, Physio, Dietitian, Speech Pathologist and Counsellor. We arrived about 0900 and left at 1500, after an intense day probably made more so by my waffling and questioning. Somehow, neither of us noticed till later that we had neither lunch nor coffee breaks! We came away with more appropriate exercises (which I have passed on to the person from Wild Dog that runs her through exercises 3 times each week) and a caution about her using a straw for drinking because a Parkies throat muscles are slow to react to streams of fluid projected towards the back of the throat resulting in particles entering the airway; thus creating conditions for infection and pneumonia. I have noticed that she has often had bouts of coughing at the end of meals when I may have given her soft drink or fruit juice to drink through a straw. The Counsellor wishes to set up some phone sessions with both of us, perhaps using Skype about which I cringe but I will set it up on her machine; the last time I used it was 2013. These items don't seem much for a whole day in consultation, but are the matters I immediately recall.

I had a cataract operation on my right eye a fortnight ago. Since it was done in Hot Air City, respite was arranged through Wild Dog for two nights and days because I was not permitted to drive following the procedure. Procedure went well.

Chapter 443 - Unexpected Behaviors

Yesterday as our youngest grand daughter from Pivot City was about to leave she decided to pack into 3 shoe boxes and a small plastic container numbers of porcelain figurines collected from years ago, usually items I had bought on my way home from trips, and kept in a glass display case that she had inherited some years ago. Each piece was wrapped in old pieces of clothing, mostly old nighties I think, and I had to print the names of the grand daughter and her 3 siblings on the duct tape I used to hold the lids on. One ornament of an old swaggy with a fishing line and "tin" tied to a toe was mine, given to me (she received something else) by a friend just before we left for the West in 1992; feeling emotional about her motivations for her actions, I had no wish to protest. Not that it mattered about "ownership", I felt terribly sad that she felt the need to give away, dispose of, her treasures well before she became incapable of doing so. She became fixated with the activity, migrated to gifting a canteen of cutlery, before opening small blue boxes of teaspoons, cake forks and suchlike in small blue boxes I used to buy for her on special occasions at Proud's in Pitt St Sydney way back in the late '50's, years before we married. I would not have prevented her from gifting those as well, but my eyes were stinging, as now as I write this. On New Year's day our son and family visited; he was gifted a small collection of Toby Jugs.

Again yesterday, she wished to go outdoors in her wheel chair. I asked her not to fool about in the narrow raised garden bed around the rear courtyard. She is helplessly attracted to pulling out mint (mistakenly planted some years ago), ripping out the mint runners, any unrecognised plants whether weeds or other, removing dead leaves etc and using her fingers to dig the loose soil. She enjoys running the soil through her fingers it seems to me. She began doing so while wearing a thumb/wrist support glove on each hand which I then washed and hung out to dry. After half an hour I brought her inside out of the sun (for I do not know whether she remains extra sensitive to sunlight), she protesting, dirt up her arms, on the wheel chair and in the tread on its wheels.

She protests that she has nothing left to do other than sewing, and that not very well. Last Wednesday Wild Dog began a 4 hour session on Wednesdays from 1000 to help her with sewing and craft activities. I hope this will be enjoyable for her because she is decidedly not keen to return to the respite sessions on Wednesdays and Saturdays where "they don't do anything".

Sorting drawers, boxes, cupboards continues unabated, although I must confess the house needs such activity. But not quite as frequently or thoroughly. Recently a lot of our older clothes were packed and hidden somewhere. Since many of her slacks had become too big for her meant buying smaller sizes meaning shopping for replacements, and that is good for her, although she complains that I fail to dawdle enough while pushing her wheel chair between racks of clothes.

I have maintained the Duodopa pump flow rate 5.0 ml/hr until this morning when I reduced it to 4.5 to see whether her mid to late afternoons are less dyskinetic for her. Most afternoons she feels very bad and dyskinetic and needs to sleep for an hour or so. Bolus doses seem not to be beneficial, although on several occasions the dyskinesias have reduced following the extra does.

The FitBit was attached to her right leg on 12th January to monitor whether a bolus was effective in reducing her afternoon dyskinesias as she sometimes thinks it does. The chart below does not suggest any reduction.

Bolus' were given at 1535 when dyskinesias were beginning and 1535 and 1800 when rather vigorous. The X axis lacks sufficient resolution for noticing short term reductions but I doubt there was any impact.

We asked our optometrist about my schedule for her various eye drops. Rather than 5 minutes between glaucoma and lubrication medications suggested by our chemist, we were advised at least 20 minutes, preferably 30. Even though I have prepared the schedule below, being a forgetful old flatulent, I am unable to stick to it. Perhaps I should find an alarm for my mobile but that will mean carrying the sod thing all day long.

Chapter 442 - A Day to Remember

Yesterday, Friday we drove to the club where we usually meet the Ugly Sisters. I was anxious about going; the last time we left early, having hardly eaten any lunch, for her dyskinesias were very bad. Yesterday was markedly different. She ate the majority of a fisherman's basket, a citrus tart with much ice cream and a small milkshake. Before we left she used her bowels, almost a miracle, for at home doing so is a great difficulty. We arrived at 1100 and left at 1500 without me noticing any dyskinesias. Neither of us ate after returning home. We were early to bed but she had difficulty getting to sleep and by 2230 her breathing was rapid, feeling hot, fast leg dyskinesias, said she was having a panic attack so I took the easy way out by giving her a Kalma tablet.

Her daytime Duodopa dose rate continues at 5.0 with a couple of experiments along the way which I won't bother to describe. I have copious pages of notes since 18th December. Attempting to transcribe them is a task I am unable to face.

Three errors are worth describing though.

1. On the morning of 30th December I woke late to the sound of "Pump Off" beeps; I think her left elbow had rested on the pump stop button during the night long enough to stop the pump; I later compared the weight of the cassette that had been in use to a brand new one; the difference was about 10 gms.

2. The night of January 3rd  I went to sleep without decreasing the flow rate from 5.0 to 2.0 so at 0200 she woke me; her whole body writhed as if a reptile, legs arms and head. I turned off the pump until 0330 when I restarted it at 2.0 ml/hr. She asked for soluble Panadol so I gave her two. She was asleep from 0300. At daylight she told me a bird sat on my windowsill and tweeted five times.

3. In the early hours of Thursday 5th January she kept waking me by yelling, laughing, speaking, snorting in her sleep. At 0615 I found her still running pump disconnected from the PEG tube and placed on the upper shelf her trolley, from where it dripped onto the lower shelf, fortunately none onto the carpet. I connected and started the pump on 5.0 plus a Morning Dose.

Following a routine visit to the optometrist her eye pressures were still over 20; a report was sent to the specialist who wrote her a letter with scripts for AZOPT twice a day, Carbomer four times a day. She continues with Ganfort pf 0.3/5 one a day and Poly Visc once a day. I made a schedule to guide me with applying these yet I still forget and delay doses. Also bought another pair of glasses.

She has Movicol once a day with fruit juice but she rejects crushed vitamin tablets and liquid vitamins mixed together in fruit juice, yogurt or apple sauce; our chemist says this is probably due to the vitamin D which he says tastes dreadful.

In December we sent not one Xmas card; she can't write legibly and I refused to make the hollow religious token gestures demanded of the season; I regret severing this once a year contact with so many; but most respond in kind with a process requiring little thought, just routine. Cards with stars,  fir trees, snow flakes, reindeer, angels and red suited fat people are just crap.

Regurgitating all this is depressing me. I stop.