Chapter 485 - Becoming Too Tired to Care Much

To West Beer on Thursday to see Dr F in his rooms, preceded by a nerve conduction study on her right side as soon as we got there a little after 1PM. About 1 1/2 hours later we saw him and this time I was not to be rushed so we had about 25 minutes. I gave him the usual summaries about her medications, etc and asked him pointedly about the CBS suggestion of Dr W as well as showing him a letter from Dr B down in Pivot City about possible CBS. Dr F said there is no sign of that and he said the MRI's he had done on her at the beginning of her care by him when I pointedly asked. He gave me pump setting changes for the next 3 months until her next PD Clinic. He was puzzled that I had been giving her a night rate of 2.2 when he thought he had said otherwise, but I told him I had followed scribbled note instructions from the last Clinic. He had copies of the FitBit graphs I thought had been rejected by the neuro we saw at the last Clinic but perhaps I had enclosed them with the Xray of her abdomen that neuro had asked for. He seemed impressed with the graphs, saying that changing dose rates at that time had no effect on her dyskinesias. He even asked whether I had bought the FitBit specially!

Month 1 MD 5.5 DR 5.7
Month 2 MD 5.0 DR 5.9
Month 3 MD 4.5 DR 6.0

The new pump settings were implemented from yesterday, Saturday 24th, when I also attached the FitBit to her right ankle. Daily Rate 5.7, Overnight Rate 2.2 (no change), Morning Dose 5.5. FitBit traces began about 11AM, none between 1400 & 1600 when she slept, a burst up to 1700 and some between 1900 and 2100. Unfortunately, I forgot to change the cassette but not her eye drops at 1700. Here was I thinking that keeping notes would prevent me forgetting medication steps. In consequence, when I changed the cassette at 0625 this morning I found the old one empty and it would have been so for some 2 hours by rough calculation. She was hard to wake, very groggy, seemed half asleep until about 1100. Coincidental perhaps that she had 4 bowel motions today, each of reasonable quantity. So up until early afternoon her day was not very good.

She began removing cables from her MS Surface Pro this afternoon, just to tidy things. Also made attempts at installing down loadable crap so I must complicate her machine by giving her a bland user account.

I checked the daily rate and morning dose flows from the main Duodopa pump into a medicine glass were reasonably accurate (the spare pump was used today.

Wild Dog sent their resident physio on Tuesday to assess the exercises she has been doing and advise the carer that usually comes 3 days each week to give her exercises.

I must place another Duodopa order tomorrow since Easter weekend is approaching. The fridge calendar is marked into 28 day periods so that I can fit another week long holiday into our cycle of Duodopa orders and PD clinic visits.

I'm tired and beginning to ramble. I never used to go to bed at 8PM.

Chapter 484 - Surprises

A phone call invited her to attend an appointment with visiting geriatrician Dr W. She had seen him two years ago then last year around September I think we cancelled the follow up appointment; perhaps due to his other commitments, perhaps that she did not wish to see him again, for he had bothered her by asking where she lived and she was unable to tell him. Anyway, I convinced her to see him at 4PM last Wednesday. We arrived 15 minutes early to find he was running an hour late with appointments. We were with Dr W. for 2 1/2 hours, arriving home at 7:45PM. Although I had supplied a list of her current medications, her medication time table and recent medical history we didn't cover all the topics I had in mind, although I tried to stay in the back ground to allow her to speak as much as possible. I rang Wild Dog from Dr W's office to ask them to cancel the evening service one it was obvious we were not getting home by 7PM.

Dr W. gave her the Montreal Cognitive Assessment Test (although it may have been a variant) which she passed with a score of 26 out of 30, an excellent score! Although I see on-line that Trump scored 100% on that test so are the results  meaningful? ;-). Dr W. then spoke about Cortico Basal Syndrome (or Degeneration) (CBS or CBD), offering to provide me with links to more information on the subject but I said I would search for information myself. I found a local introduction on the subject by the Progressive Supranuclear Palsy Support Group (PSP Australia) and intend to buy a package of information. In reading material on the subject I find words like "atypical Parkinsons" and others that neurologists have used to describe her symptoms in the past. Symptoms of CBS are "stiff muscles, slow or awkward movement, shaking, clumsiness, jerkiness, loss of coordination and numbness or loss of sensation in part of the body"; all terms that describe her condition, as well as "thinking problems, such as speech disturbance, word finding difficulties, memory loss and problems with planning". I hear you say "the poor sod is grasping at straws" but you are so wrong! For there seems to be no treatment at all for CBS so I see no benefit to her by calling her crippling condition by another name. The PSP article also states "A limited response to Parkinson's medication is a key indicator of the need to review a diagnosis of Parkinson's". Over the years she has been administered almost every type of Parkinson tablet (or its equivalent that I'm aware of) before being referred to Hot Air City Hospital PD Clinic for Apomorphine from where, due to less than expected results, she was referred to West Beer PD Clinic for Duodopa. At her last private consultation with Dr F, he said words to the effect "You have not responded to Duodopa as well as our other patients". She next sees Dr F this coming Thursday and guess what I will question him about?

Meanwhile she continues her obsessive pursuits. Yesterday a Wild Dog carer was with for the usual 5 hours. After being pushed around our Village in her wheel chair she decided to re-attach the edge panels onto a quilt she had dismembered some time ago. When I returned the woman said to me "Do you know what she has been doing for the last 4 hours? Trying to thread the needle on the sewing machine!!" Ignorant bitch she is! The tiny hook that pulls thread through the needle eye had been bent out of the way and it no longer went through the eye. I had to take photos with my new phone (Samsung S9+ :-)) to see which direction the hook needed to be bent.

Another Wild Dog carer told me of an Oz web site that had daily crosswords and other puzzles. She enjoys doing them but has problems remembering the various mouse clicks to navigate her way around a puzzle. She was having difficulties seeing the numbers on the crossword boxes even though correct navigation of the puzzle makes such numbers irrelevant; so I replaced her 22" monitor with a new 27" one. A child's keyboard with 1" square keys, brightly coloured has been ordered for her to find the keys better.

And so our daily grind goes on.

Chapter 483 - Some Experiments are Successful

Beginning on Tuesday 13th February her stoma became infected. Prior to that there was redness where the sticky tape had been. Wiping with a cotton bud and saline each morning has removed the colour and slight discharge so that today the stoma is now clear. I often fail to remember to wipe the stoma area with a cotton bud after she showers. I applied Dermaid 1% to the redness where the tape had been and also to a red spot that appeared several cms away from the stoma.

With her guidance I completed shortening the legs on several pairs of my trousers. Nothing fancy, just turned up the cuffs, a row of stitching then cut off the excess. She is no longer able to do complete such a simple task.

The Saturday before we left on our holiday my left ear became completely deaf. By the time we returned, having used a whole bottle of Waxol in it, our doctor diagnosed an inner ear problem, recommended allowing a fortnight before serious treatment, and last Saturday the ear suddenly came good again, as well as that ear can. One afternoon in the motel in Border City after I had placed her on the toilet I needed to sit in her wheel chair for a considerable time, I was disoriented and had to grasp furniture to stay upright, then after I helped her off the toilet I vomited. Our doctor later said this was due to my inner ear problem.

We drove to Border City on Tuesday 20th February, returning the following Tuesday. At several rest stops along the 4 lane the locks on the disabled toilets were broken; no need for my MLAK key. Since buying that key in 2002 I think I needed to use it once; the key a good idea not respected by those needing the facility of a disabled toilet but lacking a key.

We stayed at the multi-story motel at the western end of the main street. The only real problem with the slightly cramped room was a step from the carpeted passage way into the bathroom. Rented equipment was already in the room; an adjustable bed, a commode/shower chair and a transporter (a somewhat smaller version of our Sara Stedy at home); each worked reasonably well as equipment for hire.

So for six days in Border City I did not drive the car anywhere. Each day we walked the main street, having "brunch" at coffee shops or the Club next door to the motel. Good exercise for me pushing her portable wheel chair and the weather was fine. Several times we used room service for an evening meal (although I had to collect the meal tray myself from the restaurant), otherwise at the Club. I had promised not to visit relatives; didn't even phone an old school mate because I was unable to find his number. A couple barged in upon us in the disabled toilet in the park half way up the main street; again a busted MLAK lock. I gave her free reign to push herself around the shop of a clothing chain she once frequented while I sat outside reading a good book. I was called in to carry some of the items she intended to buy; such were slipping from her lap. The total came to $315. Apart from that expense only few useless things were bought at junk shops. I visited an optometrist shop to have my glasses repaired for free; the frame had been warped and a screw had fallen out. One morning we spent a short time in the Botanical Gardens; in a disappointing state compared to my childhood memories. While there she "trimmed" a climbing rose in an arbour; there were straggly branches with rose hips at the ends. She collected quite a large bunch until I convinced her the gardeners would be upset to see her leaving with the bunch in her hand, so I removed the rose hips which she wished to take home to plant, hoping for roses to grow from the seeds.

Back when I hoped to organise a fortnight of respite at a nursing home for her, her sisters had volunteered to stay with her but only for a week. I had decided that I would not go way during that time. Their commitments then reduced the period to several days once we returned from Border City. That was OK, a chance to discover how well they cared for her and how well the three of them got along together. I was quite pleased how matters were going (except on Friday night during a discussion about gay marriage etc etc when there was an angry outburst from the younger that heterosexual marriages were decreed by God and I replied that marriage was the transfer of property rights in paternalistic societies of females; I suppose I asked for it) until Saturday morning when I walked in on an angry rant that my PWP should be grateful to have someone to look after her; I think my PWP voiced her concern that should I go off on respite that I won't come back. I took fright, my PWP was beginning to cry, her sister was becoming belligerent, I left them to it and began cutting up the cardboard boxes my PWP's incontinence supplies were delivered in, to place in the recycling bin. I was joined by the middle sister who helped pack box pieces in the bin. A suitable way of passing the time. From inside the house ranting continued for awhile then came apologies. That afternoon after we saw them off  at the railway station I asked her what the the incident had been about; she was unsure, thought the anger was something to do with a son who has no support at all. She did not understand. The outburst confused her. After we returned home she began pulling the craft and quilting magazines off the shelves in the back room; she wished to throw them into the garbage, the reason being she was unable to sew any more, she had no need of them. Was this the result of the outburst upon her in the morning? Perhaps not, I suspect she has been thinking this way each time she fails at doing that which she was once very competent.

So one experiment worked, the other failed, an example that anger does not work but in this instance she is the one to suffer. Anger only induces confusion and stress and may I remember that well. Now to plan for another trip away.