Chapter 500 - A Week of Anniversaries

I suppose "Chapter 500" is at least a "kilometre post" but ever achieving the 1000th is most doubtful, since last Tuesday, the 11th of September, I celebrated my 78th birthday by acknowledging it but with no celebration at all (although one small part of the world community truly celebrate the day yet without anything that goes bang, so very thoughtful of them). Then on Thursday 13th of September she celebrated her PD diagnosis in 1991 down in Pivot City, by appointment with her neurologist up in West Beer. I even made mention of that as the last point of 10 on my list of things he should know and which there is never enough time to explain to him.

Since we seem to agree that her early afternoon bout of dyskinesia seems not to respond to standard tuning of her Duodopa pump flow rates he gave two plans; the first to implement an increase in flow rate once her afternoon dyskinesia begins and the other the introduction of Symmetrel (Ammantadine) in stepped quantities beginning with one tablet at 0800 each morning for the first fortnight. He is not keen for her pump/stoma fittings to be maintained by other professionals than the West Beer PD Clinic people. In my notes I mentioned for each round trip to either see him or the PD Clinic costs her Level 4 plan approximately $700. I expect the costs of Thursday's jaunt will be somewhat higher than that because I asked for us to be collected at 1000 for the appointment at 1300 so that we were relieved of time pressures and a little time for the disabled toilet and a spot of lunch. I need not have bothered for the neurologist was running an hour and a half late with his appointments, as evidenced by the patients standing in the passage outside his claustrophobic waiting room. We returned home at 1830, quite stuffed, just in time to use our loos before the Wild Dog Carer arrived to help her to bed. I had contemplated driving our car to the appointment, since parking at the neurologist's is somewhat easier than at the hospital across the road.

In thinking about her bursts dyskinesia between late morning and late afternoon, I remembered my experiment from years before when we proved that she has a skin allergy to sunlight. In an attempt to shield her from sunlight I closed all blinds and curtains before I took her from bedroom to bathroom at 0745; even duct taping old kylie sheets across the bathroom window. Apart from some minor orange bars on the FitBit trace, the lack of green bars (indicating bursts of 2000 steps) made me very confident that sunlight was a partial cause of her dyskinesia, but damn it all, shortly after 1600 dyskinesias began in earnest, peaking with green bars around 1700 and diminished to zero about 1900. Ever the stupid optimist, the experiment was repeated yesterday (by simply leaving the blinds in place) only for a burst of dyskinesia to begin about 1030 and continue till about 1300. Disillusioned by my failure, I opened all the blinds so we no longer existed in a WW III twilight, and to prove that her PD was more clever than I, another burst occurred between 1700 and 1900.

Disappointed with my sunshine experiment, and since today is the first day of the week (a hangover from my mis-spent youth) I put into action the neuro's plan. There were mild dyskinesias when I transported her on the Sara from bed to loo (such are normal due to the stress of the movement) and then I transported her on the commode to her pedal machine. While she peddled, I attempted to do some Wii Fit exercises (yes, some still use it!) only to find that the DVD had been removed from the controller. It took some time to find the DVD. I was angry. She seemed not to know what I was talking about. I hadn't removed the DVD; I doubt a Wild Dog Carer had done so either. After showering, dressing and into breakfast her dyskinesias continued. At 0800 I gave her her first Symmetrel. Then since the dyskinesias continued I raised the dose rate from 5.5mL/hr to 6.0 mL/hr as instructed. She submissively accepted my offer of Sunday shopping; I pushed her in her wheel chair around the shopping centre then most of the length of the main street and back, bought some craft magazines for her and lunch (hers only a mango thick shake) followed by a little supermarket shopping and a chemist  visit for the only glaucoma medication she is currently using. Then home at 1300 when the dyskinesias ceased and now 2 hours later there is negligible on the fit bit trace . Perhaps I initiated stress causing dyskinesias this morning. Yet to see what happens by afternoon end.

In reviewing my last post I realise I have to conclude her story of inflamed eyes. We returned to the Eye Clinic at Hot Air City on Monday morning as requested, not having used Simbrinza on her eyes as requested. Dr Old (the ophthalmologist that gave instructions on Saturday night) thought her eyes had improved, so we are to refrain from using Simbrinza and to attend her eye specialist on Thursday coming for further instructions. To date, her eyes have decreased their redness but remain very watery. She is tending to wear sunglasses and avoids bright light.

Very early one morning this last week radio national replayed an interview regarding music therapy for a range of neurological issues. People respond more to songs or music associated with their youth, responding with pleasure to well remembered tunes of long ago. And pleasure releases dopamine. So I asked her what songs she enjoyed before we met; there were none, or she was unable to remember any. She remembered no Top 10 or 20 records from the late 50's, nor listening to records or radio. I find this quite strange. When we met I was leaving behind the hit tunes of the mid to late 1950's rock and roll era (back when vocals were still heard above the instrumentation). In our courtship years then when we were young marrieds I listened to the likes of Peter Paul and Mary. What about her? I really don't know and isn't that shameful? I will ask her sisters what they may have listened to; probably the early years of Bandstand on TV? So I asked her to write down the names of songs she enjoyed, songs which I would download. To my surprise she found some old church song books, writing down almost every song listed. YouTube came to my help. On Friday I bought a boom box radio with CD and USB input and a 32GB stick. A wide collection of hymns and gospel songs, plus a few folk songs thrown in as a variation have been playing ever since.

She continues sorting, filing stuff (as evidenced by the Wii Fit DVD) haphazardly causing her to revisit and do the jobs over again in the near future. Knitting patterns are copied, sometimes in larger fonts, for her to begin jumpers, beanies and the like but within a few rows of casting on, something goes wrong, although she can never tell what goes wrong, so the lot is pulled undone, resulting in knots and tangles which require cutting into sections that are then wound into very small balls. Sometime later she repeats the exercise. Often with another pattern, another new ball, cheap stuff at $2 a ball.

I think I have mentioned buying her a Kobo Aura 1 eBook Reader. She was unable to hold it steadily enough in bed and several attempts at placing a shelf over her bed were unsatisfactory. I went looking for an adjustable wall mount for a small TV and that has proved ideal. All I needed to add was some Velcro to attach the reader to the plate intended for the rear of a TV.

A rather sad, lonely little bloke up north (a first cousin of mine) has been told he has one to five years after being diagnosed with mesothelioma. When he first had suggestions this may be the prognosis his thoughts were on finishing things quickly; now he intends to fight against the odds. I thought of telling him that at my age, and with my ancestral statistics, 1-5 years was not a bad outlook; but I thought better of saying that.

Chapter 499 - Is She Still at Home?

"Is she with Wild Dog Care or is she still at home?" he asked quietly as we both sat to the side of his desk, she in her wheel chair, I on an ordinary chair, in our GP's room. I had made an appointment early in the week when I became really concerned about her eyes but she had to wait until Saturday morning, yesterday. Her eyes had become more red-rimmed than usual, her eyes were always wet and the skin below her left eye sometimes looked blistered, scaly. A carer had suggested Vaseline below the lower eyelids; the chemist concurred when I asked whether there were any known issues with Optifresh eyedrops, a replacement for Celluvisc; there weren't. Our GP became concerned that she needed to be seen by an Opthalmologist. Since this was a Saturday, he gave her a referral to Emergency at the Hot Air City public hospital. We arrived there at 1430, leaving at 2030; 6 hours spent much in waiting. Fortunately everyone that dealt with us was kind and considerate, even though her dyskinesia problems made eye examination difficult. Wardsmen, looking like retired rugby players, were needed to lift her to and from the wheel chair to the optometrist examination seat (the chair contraption with examination lenses and the shelf to support a patient's chin). The ward doctor assigned to her was unable to obtain sensible pressure measurements; an eye specialist doctor eventually  said the pressures were 20 and 21 then requested us to return on Monday morning by which time swabs from her eyes would be analysed (I hope). In answering their repeated questions about events that had occurred three to four weeks ago, about the time I noticed changes with her eyes, I related how I had had my dose of Lingering Man Flu beginning about 2 months ago, the change from Celluvisc to Optifresh eye drops, her use of the eye shades bought on line about a month ago. I was reminded of my Kepner-Tregoe problem solving days! The eye specialist (who looked young enough to be just beginning his training) consulted with a superior, then asked us to attend the Eye Clinic on Monday and to not use the eye masks (possible source of infection), discontinue Simbrinza (hazardous since it is one of the two medications controlling her eye pressure) because one of its components is known to cause a delayed allergic reaction some 9 months after first use, and not to apply Vaseline beneath her eyes. We called into a MacDonald's on the way home but she didn't eat much of the chips and gravy she asked for. Even though the car is now 5 years old, this was the first time I had driven it any distance at night time.

Returning to my opening words, I find that when in a group her attention wanders, she seems to "turn off", tending to go about her own business. In a doctoring environment I tend to answer questions for her since she tends to dither and not respond; I really try not to do so but her silences waste time. I was quite taken aback by the GP's question, asked about half way through the consultation and to which I simply replied "At home". She seemed not to notice and made no comment then or later. He also commented that she had lost weight. Has she? I have not noticed and she hasn't been weighed in a long time, being wheel chair bound. Makes me wonder whether others think she is deserving of being institutionalised. Apart from the Dance for PD class at the church hall and her attendance at a ladies "sewing circle" on Thursdays in our village hall, the only social contacts she has are the Wild Dog carers who help shower and dress her, and also stay with her during my Wednesday respite 5 hours. A friend in our village never calls anymore; no one telephones her but in fairness, she doesn't call anyone either. She finds handling a phone difficult. Perhaps she has no conversation to share.

I am tending that way myself, and speaking of health matters, medications and such to others in our age bracket is simply a great bore. But when there seems little else, what does one do? I have a couple of friends with whom I have regular contact, yet with some conversational difficulty, when one or the other of us admits to not watching/listening to current news and politics, reading books, watching current TV programmes or movies. None of us are interested in sport thank goodness.