Chapter 509 - Silly Season

I often say that in retirement every day feels like a Saturday and that impression is worse this year for me when Xmas was almost in the middle of the week. My only real markers for Saturday are my need to watch PBS Newshour around 1PM of a Saturday and the need to buy a Tatts ticket before Saturday evening. From my biased viewpoint the USA's PBS has a very balanced view of that misguided country's outlook, especially in this Age of Trump when critical decisions are broadcast via Twitter. And Tatts? We have no need of winnings to maintain our sedentary retired life style but buying a weekly ticket began years ago as a "game" she could play each week checking the numbers but continues as a habit now that she experiences much difficulty in assessing the results, especially these years when she has been in bed for at least several hours by the time the results are released, and I find it easier just to print off the list of drawn numbers showing our "chosen" numbers. We hardly ever win anything, and far from enough to maintain credit in my on line account. Sometimes she expresses concern that should we ever "win" then we will have problems with the ATO and other caring government departments. That we should ever be so lucky!

Another pair of her slacks have come to a sad ending when she decided to remove the pockets from them. I tell her just to sew them shut but she needs to cut the out completely, meaning that so much is hacked away that the remnants end in the rag bag. For ages now she has been unpicking quilting squares she had made a long time ago, why she did so I have been unable to understand. Then in the last week or so she has sorted the triangular, rectangular and squared pieces into piles until she decided all was scrap and should be put in the garbage. I suggested we place the lot in a large plastic bin liner for another time. A stippled, lined, frilled bed spread she dismantled ages ago has been revisited again. Attempts to pin the frill around the edge fail when the gathering is either too tight or too loose so that the frill fails to edge the circumference exactly, at which time the pinning is removed until next time. In watching her sort the small pieces of fabric I wondered whether jig-saw puzzles may be beneficial for her. Not physical ones, something to suit the Samsung TAB A  unused since I interested her in "computer" games. I found the desired application quite quickly (well they seem quite commonly available) that creates 25 piece jig saws from provided images. Only 25 pieces at the basic level of complexity on the 10" screen. After showing her what to do to finger-tip drag the pieces around, pieces that obligingly lock into position after correct placement, I left her to it, returning about 15 minutes later to find that she was still moving pieces about on the same puzzle. I helped her finish the puzzle; she has lost interest. Honestly, the 25 pieces can be correctly arranged in about 1 minute. She was disinterested in attempting a puzzle with a larger number of pieces. This afternoon when she gives up tinkering with the old bed spread and needs to put her feet up I will see if she wishes to try more jig saws. When I just went to check on her she was trimming a wide elastic band removed from an "old" pair of trousers to be placed on another pair. There was no real answer when I asked why.

At times she has watched 2 or 3 movies at a sitting. My difficulty is finding movies or TV series she likes on free-to-air or NetFlix, Stan, BigPond, YouTube. Anything more complex than "boy meets girl etc" leaves her bored. Although I must admit I have difficulty finding material for myself to watch.

On December 19th I emailed images of her inflamed gunky stoma to the consultant nurse at West Beer for comment. I was advised to wipe the area with non-perfumed baby wipes and apply a little Sudocrem ointment to the red areas. I can remember being told at the beginning of this Duodopa saga not to place ointment of any sort near the stoma. The gunk, a dried dark residue, is sometimes more or sometimes less in extent each morning when I clean the area and re-tape the tube to her tummy. She lays on her back all night. She says there is no pain or stinging in or on her tummy. Since learning that Abbvie do country town house calls my written request to them was forwarded to West Beer from where I have been asked to request in January the service and some form of consent will be sent to Abbvie. All very strange; when I raised this matter with Dr F. last September he asked me to wait until the West Beer clinic a few weeks ago, and I did so with no decision made. As we age these trips to West Beer are more onerous, more so when the advice given at each visit is minimal, the professionals seen are always changing, none knowing her history and the only benefit is the replacement of the PEG tube fitting.

Since Xmas Day I have reduced her pump setting at 4.8mL for daytime running and maintaining 2.0mL overnight. Earlier in the month I re-introduced her to Symmetrel morning and night until she began hallucinating again so I only give her one each morning now since 21st December. I was very happy to see the FitBit (attached to her right leg) chart for last Friday 28 December, the best almost dyskinesia free day seen since I began using the device. During the period between 0930 and 1600 we drove 80 kms up the 4 lane to a Club, had lunch with her sisters there then returned; both directions in reasonably heavy traffic. Usually when out in public the dyskinesias are very bad. Below is Friday's FitBit chart suitably annotated.

Next follows the chart from the following day, yesterday, Saturday 29th December, a day when she was home all day, watching a movie and a TV series on NetFlix. She says she felt "on edge".

So what happened yesterday to induce more dyskinesia than the day before???????

Just now at 1415 I took her to the toilet on the Sara Stedy transporter after dyskinesias had just begun, so the current chart displays some peaks from 1400. I really hope that we may have stumbled upon settings of benefit to her. If only I can find suitable medication settings and a physical/emotional environment combination to improve her quality of life I will be content.

Chapter 508 - Loneliness

I go to sleep each night with an ear bud in my right ear listening to RN. A few nights ago I surfaced in the early hours listening to a discussion about loneliness, the words heard kept me awake for the following two hours, remembering my experiences of being alone. Strange to say I can only remember a few instances, none before marriage, just those times when I was away for short periods working and living in motel rooms for a week or two, or when she has been in hospital for a short while, when watching TV, going to movies or reading books filled my free hours until such activities became meaningless. Then I found aimlessly driving around was a most unsatisfying pursuit. And when she has been in hospital, or the one occasion we "experimented" with respite accommodation for her, I tended to fill my idle hours visiting her, collecting clothes to be washed and then returned, or visiting to ensure her PD meds were being taken or adjusted correctly. I just feel "at a loose end" at such times, times when I ought to unwind. Thinking on these matters will force me to ring some friends not heard from in many months. Her friends no longer ring her, some of whom used to spend ages on the phone to her; I think I can understand some reasons why, her voice has become muffled, she often bumps buttons disconnecting the calls, she has little knowledge about the comings and goings of our grand children to trade with others and is unable to answer questions about same, she is no longer able to do or discuss sewing projects. And of course, we no longer visit anyone because of steps, stairs, small toilet rooms and toilets without sturdy grab rails, and of course, distance. I promise myself I will begin making calls to close friends no longer so, tomorrow! Yes, that's me procrastinating again, reasoning that people have visitors or go visiting on the weekends. Surely, they are not in the same situations as we are?

Then about the same time the following morning RN had a discussion about Xmas. Although no one is aware, I am very emotional at Xmas even though I have become, over the years, disassociated from the beliefs, rituals, and modern Disney fairy stories about the non-historical event. I can't even call hypocrites those who participate in the rituals that have gradually morphed over centuries into modern day cartoon characters, exported as culture from a super power; for most have little understanding of the origins of the beliefs on which the modern day farce is based. Often at this time of year I reach for my aged copy of "Hilaire Belloc: An Anthology of his Verse and Prose" by W. N. Roughead and read "A Remaining Christmas" just to feel grounded in reality, although even this description of the event is based on myth, although having a sense of deeper, more meaningful beliefs, and that may be an insight why some ageing people are taken up with the solemnity, the mysticism, of Catholicism. Do not be concerned, I shan't be.

Years past when we temporarily moved West I took advantage of the Xmas commercial ritual to send cards to relatives and friends, all and sundry, just as a reason to keep in touch with hundreds of cards (that many? well probably some way short of 200). However once I retired and we returned East such a number of cards became quite a chore; we began to limit the number sent out, attempting to respond in kind to those sent to us. I particularly resented being "handed" un-stamped, un-addressed cards, in person, suggesting somehow that verbally expressed  "best wishes" required documentary proof.

To date we have only received 5 or 6 cards, possibly a larger bundle in the coming week. A few days ago I declared we would not send any. This morning I found her rustling through her box of cards left over from previous seasons and I weakened. I asked whether she wished to go down town to buy some more; "yes" was the answer so we did. Since she is unable to write well enough I will have to shoulder the task.

I returned her to 2 Symmetrel at approximately 0730 and 1930 each day as well as reducing her Duodopa from 5.5 to 5.0 mL. Although I suspect she may be "stiffer" in her movements I have not seen any real improvement in her dyskinesia. Two possible side effects may be: firstly, she is unable to feel for and find her hand operated brake levers with much success, even when I verbally direct her hands and instead she will rub her hands around the periphery of the wheels seemingly unable to figure out she needs to move her hands in a forward direction to grasp the brake handles; secondly, although she has always been afraid of the slightly sloped footpaths (toward the roadway) along the town's main street, this morning she was quite agitated whenever I had to wheel her down the curbs and across the intersections. Her fear was particularly pronounced at the entrance at the doorway to one of her favourite junk shops, yet not noticeable at the ramps inside two of the shops.

Chapter 507 - Patronised

Last Wednesday up early to set her pump for daytime dose rate at 0535 so that she is somewhat mobile when I transfer her out of bed onto the commode a little before 0700 then to give her breakfast because I had been told a Carer was scheduled to give her a shower at that time. Fortunately I gave her breakfast early because the Carer did not arrive until 0720, the time the office told the Carer to be here; not really late, just different to what the client had been told. Doubly fortunate when the cautious driver to take us up to West Beer arrived 10 minutes earlier than planned at 0800; because he had not driven us there before. An uneventful trip to have us there at 1020. The waiting area was full, no one at the check-in window, so after a brief closeting in the disabled loo I fronted at the window and when asked for my number I tore one from the roll similar to the type often seen at a deli at a supermarket. "There it is -15" I said. So I was asked to sit down. Well there was nowhere to sit. Then #14 was called. So the lack of clients at the window must have been due to the overwhelming paperwork load for the receptionist. Sometime later my number was called then I returned to holding up the wall; she was OK in her wheel chair. Her name was called for the usual regular replacement of the PEGJ attachment on her stoma tube. Then out to the waiting room again. After awhile the crowd thinned so I was able to take a seat. Her pump began to sound High Pressure alarms which I diagnosed as being due to the replaced fitting rather than kinks in the hose, so I asked to see the Clinic Nurse. While I was absent an interfering carer for another Parkie Patient had begun to poke and prod at the tubing. The Clinic Nurse came, looked at the pump and fitting and all that I saw her do was unscrew the coupling (which I hadn't done) later when I asked I was told that nothing had been done; really put me at my ease seeing that we had a 2 1/2 drive at least to get home to a country town. At 1241 I rang the driver to advise him we were running late. Sometime later we were ushered into a consultation cubicle.

A junior neuro was there to go through the basics. He knew nothing of the Symmetrel trial and its results; there seemed nothing about it on his data base. I attempted to fill him in on the details by waving my finger at pages of FitBit charts. He seemed disinterested. He ran her through an abbreviated foot tapping routine, asked whether a nerve conduction study was done at the last visit to Dr F. "No, that was in the previous visit". An obvious need for MyHealth (is that what the government calls it these days?) sharing of data. I asked whether Dr F. was here. The answer was "He's around." A senior neuro came in (you can tell by the grey suit worn as a uniform). He seemed to think we had met before, perhaps we had. I began to tell him about the Symmetrel trial and he responded as if he knew about it. I waved FitBit charts, pointing out that her daily dyskinesia patterns had changed somewhat after she had stopped taking Symmetrel. The man gave the impression that could be only for a short time afterwards. I mentioned the word Symmetrel ER, and the man responded "Rubbish! Forget about that." to which I commented that my reading suggested the ER form was designed for this situation, waving my hand toward a pair of dyskinetic legs. Someone asked what the reaction to a bolus dose was; I said "None". It was decided that the bolus setting be increased from 2.0 to 3.0, a male clinic nurse was summoned to make the change to the pump. I was asked whether I was able to make further changes, I said "Yes, I have the manual". I mentioned the time she was given Botox injections in her left leg when Dr F. asked for 2 bolus doses be given 20 minutes apart and as far as I could tell the extra dosing had nil effect on the dyskinesia. The reply was reference to dystonia and the tremble she was then exhibiting in her chin (in hind sight, I only see one patient who has her own symptoms, the most debilitating being dyskinesias of her legs and signs of other symptoms are not noticed by me and I, her primary carer, have never been "trained"). The man said one Symmetrel a day, or perhaps every second day could be tried. I then, stupidly, referred to a lifetime in the computer business intending to introduce the topic of "trouble shooting". The man interjected that the body was much more complicated than a computer. Instead of telling him trouble shooting techniques were universal and independent of the type of machine under investigation, I replied "The good thing about a computer is that it can be unplugged." He reacted and as he left the room he said something like "You can be put in gaol for saying that!" He must have been thinking in terms of euthanasia. Somewhere in all this I asked the Clinic Nurse whether she does house calls for stoma maintenance; she replied that Abvie (the Pharma that supplies Duodopa may do so). So after a torrid gathering we left the room without a written plan on how to proceed with her meds. I lost my way in the labyrinth of the hospital, found my way back to the waiting area, we made use of the disabled loo once again, found the lifts, out to the front door where I rang the driver at 13:43. An uneventful drive home except after leaving a McDonalds and when my face was in a Big Mac, the driver failed to take the exit from the western to the freeway south so we travelled some 10 kms out of our way. I have since sent an email to ask whether Abvie makes house calls in country towns. I hope so because that will save about $800 out of her Level 4 Package for the day trip to sunny West Beer.

Chapter 506 - The Gradient is Downhill

For some time now I have noticed a burst of hits on this blog, maybe 70+ each time, and I puzzle who or why such happens, but I'm not tempted to allow comments to find out why anyone may wish to read this waffle. I'm approaching that moment when I will say enough is enough. And now it's time to buy a hard copy print of this year's posts, an attempt to make my ramblings permanent, for a short while at least, insurance against someone somewhere pulling a plug on a server.

In the last post I mentioned taking her to the version of Dance for PD held each second Thursday at Wild Dog. The nice lady who conducts the session is the same that has the Tuesday sessions at the church hall each Tuesday. After her first attendance at Wild Dog she had no wish to return; she found the participants "not quite with it", not alive, and many nursed cuddly toys. I gained the impression that she still had some way to travel before she was in the same state. The following Tuesday I mentioned this to the nice lady who said she expected the reaction and said there is a marked difference between the atmospheres of each venue.

She has returned to pinning a frill around the edge of the quilt that she dismembered ages ago; a work in progress. Another is pulling apart completed quilt blocks because she finds errors in her previous work; hacks away with scissors or stitch rippers, throwing the  pieces of threads on the floor. Every so often the threads are vacuumed away by me, except for those that entangle in wheel chair axles or are walked into other parts of the house, usually left for the fortnightly cleaner. A few days ago she ripped apart one of those home crafted crocheted looped  clothes hanger covers, exactly why she could not say and later I vacuumed the pile of chopped bits of thread on the carpet. Each shopping trip, usually on a Sunday, we spent, until recently, about $20 buying quilting and hand craft magazines which kept her entertained for hours (never made any of the projects, perhaps just dreamed) but her interest has waned so now we buy a puzzle book or a ladies magazine or two. Even so, she is far less interested in visiting the shops on Sundays and for several weeks we did not leave the house except for Dance for PD.

At night she lacks interest in watching TV channels or NetFlix, seemingly content to read Mills and Boon novels on her eBook reader mounted on the foldable arm above her bed, although how much she actually reads on any one evening is really very little. She has always enjoyed watching "Letters and Numbers" on the ABC and of late I noticed her interest in those hideous emotional over acted quiz shows with inordinate prize moneys on commercial TV.

Since ceasing the Symmetrel she usually experiences bad dyskinesias on waking and on going to bed, as if her system has a memory of the medication modifying her circumstances. Last night her legs were so dyskinetic and painful, even resting them on bean bags helped little, I gave her a Kalma pill at 1830 and had her in bed before the Wild Dog carer arrived to put her to bed 1900 by which time she was much relaxed so the carer chatted women's talk with her for 30 minutes. She sleeps restlessly, throwing bed clothes on the floor, two fans blowing on her because she feels so hot, so at 0600 when I begin changing the duodopa cassette and the dose rate she is uncomfortable, in pain and irritable. A few days ago one of the carers noticed specks of blood at the bottom end of her sheets and we found that the skin on the tip of one of her toes was worn away, whether due to the stiffness of the new sheets excessively rubbing on her toes during dyskinesia or due to new shoes or both.

Several weeks ago she tumbled forward out of her wheel chair as she leaned to pick up a pin off the floor (along with threads as mentioned above, she drops pins and needles all over the place) without applying the wheel chair brakes. She did not hurt herself, seemingly, and I foolishly  dis the usual packing up with pillows to place her on the Sara Stedy then returned to the wheel chair. Days later a large bruise developed on her left hip and a small yellowish one at the hairline on the left side of her forehead. Prior to that incident and ever since I have suffered awful pains in my back and rib cage, pains that "grabbed" at the most inconvenient moments. The rib cage pains moved from place to place so I realised that my frequent sneezing in the warming changeable weather of late spring may have caused the problem, so every time I detect a sneeze coming I spray my nose with Nasonex, too often I suppose for the health of my nose. Anyway, my back pains have eased considerably.

Since she is needing more assistance on and off the loo, the wheel chairs and bed I researched the matter of a lifter/hoist. Also, in the back of my mind, a portable device we may be able to use should we dare to go away for a few days, staying in motels. After some searching I discovered a Molift Smart 150, a hoist that will fold up for transport or storage. Down at Hot Air City I saw the demo machine, and in its folded condition it will lay across our car when the rear seats are laid flat. After the drive she did not wish to leave the car or test the device. That is a matter I have yet to tackle. Anyway, a deposit has been paid and we may have it in time to trial it by attending her aunt's 94th birthday in 3 weeks time. I am unsure how we will cope using a lifter/hoist but the Sara Stedy is approaching its use-by-date in terms of convenience to us.

I may not have mentioned the various scans I had to diagnose why I have experienced three bouts of postural instability sine the beginning of the year. A CT scan of my head, an MRI of my brain, a CT scan of my carotid arteries revealed nothing of concern to the experts her examined the scans. The comments suggest crystal formation in the balance ducts in my ears. I found when I pressed around my left ear a slight sensation of tilting occurred and since I am due for a hearing test I had my ears flushed a few days ago. The nurse said she was unable at first to see my left ear drum; the hearing technician will be pleased for not wasting her time.

A drive up the highway in pouring rain to see her eye specialist on Wednesday last. Ganfort has been administered to her eyes again since 4th November without allergic reaction and her eye pressures are 15 and 13. Good news!!

Following are FitBit traces of her right leg since she began taking Symmetrel, discontinued when hallucinations became unbearable for both of us.

When all FitBit charts are observed there seems to be a trend towards less dyskinesia as Symmetrel doses were increased from 1 to 2 then 3 per day when hallucinations became intolerable and the Symmetrel was discontinued. I think there was less dyskinesia in the week or so after discontinuing Symmetrel but she has now developed a tendency toward excess dyskinesia on waking and of evenings prior to being put to bed. My appreciation of these problems is more intense in reality than by looking at these charts, although if I displayed 3 months of charts here the reader may appreciate what I'm speaking about.

The horizontal lines labelled 2.0, 5.0 etc are the duodopa flow rates suggested by the neuro.

Saturday 11th August prior to Symmetrel

Sunday 16th September, first dose of Symmetrel

Wednesday 17th October, Symmetrel 3 times each day

Thursday 18th October, Symmetrel 3 times each day

Friday 19th October

Saturday 20th October

Sunday 21st October

Sunday 28th October

Tuesday 30th October

Thursday 1st November

Friday 30th November, no Symmetrel



A picture is worth a thousand words was once said but what do these pictures say?