Chapter 474 - Too Many Cooks

A pleasant enough trip to West Beer PD Clinic on Wednesday last. A new face, Dr A. among the gaggle of neuros.  He asked the usual questions of her and put her through the usual finger fumbling and foot tapping tests. He and another seemed pleased she will undergo another nerve conduction study when next she sees Dr. F in his rooms next March, almost as if such tests have curative properties; I shouldn't be cynical. I pointed out that the Duodopa night rate had been increased on Dr F's instructions to 3.4 mL/hr and as a result morning dyskinesias had occurred and although nobody gave me directions on how to reduce the Morning Dose (again as suggested by Dr F), I had replaced the Morning Dose of 8.0 mL with three Bolus doses each of 2.0 mL after the morning dyskinesias becam evident. I showed Dr A my commented FitBit step charts and although he seemed interested in the results did not wish to place them in the file "because of difficulties doing so with their new system"; he said them same when I offered him a file instead. When I pointed out that dyskinesias were occurring in the early hours on some nights he said that was possibly due to a more active REM phase of sleep. I had jumped to the conclusion these dyskinesias indicated wakefulness, and some probably do but I was unable to be sure because when she does wake I try to "remain" asleep, and not take notes. For instance, last night she woke me by switching her light on, demanded to be helped  up so that she could "stretch her legs". Instead, I tilted her bed, slid her up the bed so her feet did not touch the bed end and had her lower her knees which had been drawn up. This morning she had no memory of the incident at all, although I wrote about it in my note book and lay awake for an hour afterwards. Just now I checked the FitBit chart and noted that there were steps recorded between 0230 and 0330. Some, perhaps all, of this could be considered occurring during REM sleep.

The Clinic did not want the used cassette showing bubbles in the tubing. Their comment was "Give it back to the chemist [where you got it from]. I wondered whether bubbles frequently occurred in the pump system to cause fluctuations in dose rate, but "It doesn't". After the fittings to the PEG tube were replaced I asked for the tube to be flushed to check whether clogging had occurred, since I had to seemingly apply a lot of force to the syringe, causing leaks at the fitting. The force needed with a test flush was deemed OK and with new fittings, without leaks.

Dr A gave me two scripts, one for a blood test, the other for an abdominal x-ray for constipation issues, suggesting the tests be done upstairs. Since hospitals are invariably slow, it was lunch time and we had a 200 km return trip ahead of us, I said we will go home and have the tests done there. I am yet to check on line about the blood tests The x-ray report says "There is heavy faecal loading of the large bowel. There is no appreciable bowel distension or pneumoperitoneum".

After we returned home on Wednesday, I noticed a hand written note in the spare pump case stating Day Rate as 5.5 mL/hr, Night Rate was 2.2 mL/hr and Morning Dose at 6.0 mL. The only verbal mention of these changes was for the Morning Dose. The handwritten note also states a 2 hour lockout on the Bolus Dose; yet I found the lockout set to 15 minutes on the pump in use and 1 hour on the spare pump.

She continues to compulsively pull threads on clothes, sort objects, clean edges and crevices. For instance, for several days she kept moving furniture away from the front window of the lounge room so she could scrape, dust and vacuum the window sill - carpet edge. I banned her from using knives, scissors and plastic scarpers so a large wooden knitting needle was found instead. I relented after several days of preventing her, so on Friday I pulled all the furniture away then she spent several hours "cleaning" until she stiffened too much to cope so I "finished off" the job. This morning she has worked on the door of the dishwasher, being told in the process not to scrape the door seal with the handle of a plastic scoop. Yesterday morning she was bothered by some old lady's whiskers on her chin so in the middle of her breakfast went looking for a pair of tweezers. An hour later she was still looking for tweezers in her sewing room; when I asked what she was doing she said "I'm looking for something but can't remember what" as she scratched around in a small box of sewing items.

At my appointment with my shrink yesterday I mentioned that she told me recently that she would like to talk to someone about her confused thinking when trying to speak to someone. Since it's not professional for him to speak to her, he gave me the name of another clinical psychologist for whom a referral will be needed from our GP. When later I asked, she said it was OK to go ahead with this.

Chapter 473 - Just a 24x7 Job

I took us both along to see our GP last week. She to have the "spot" on her right leg examined; me to report dull headaches above the eyes, sleeping poorly, sensation of "wobbling" when walking, light headedness and weight gain. She was told that the spot may be biopsied and was given a referral for a bone density scan; why the latter I don't know and didn't ask. I was given a script for an additional blood pressure med (Nordip as well as the Avapro already being taken), a blood test and told to return for an ear flushing (I asked for this since I am scheduled for another hearing checkup). The nurse who some days later did the ear job said that although my insulin and cholesterol figures were on the high side there were no critical results; and I haven't been summoned to revisit the GP yet. The  appointment for her bone density scan was on Wednesday just gone, one of my 5 hour respite days, so I returned from a coffee, foccacia and a book read in time to take her for the noon appointment; I was the transfer power to assist her from the wheel chair to the scanner couch and off again. The remainder of my respite was used for super market shopping; the Wild Dog carer for the respite took a break while we were gone (management rules). Yes, I could have had Wild Dog transport her for the scan and return but that would have required one of their vehicles she is able to get into (or a wheel chair friendly cab) and two carers, so why didn't I think of that the other day? Anyway, a moment ago I interrupted this typing to ring Wild Dog to be told "Yes we can arrange that next time and yes, two carers will be required". Put this down to experience as part of a 26 year learning curve.

I'm sure I have mentioned that the Duodopa night rate was increased gradually from the last time we saw neuro Dr F. I sent the following to the appropriate nurse at West Beer :

"When we saw Dr F on 3/8/2017 he requested that the Night Rate be increased in 0.2 mL/hr fortnightly steps from 2.2 mL/hr  to 3.4 mL/hr maximum. The first step to 2.4 mL/hr began the night of 4th August and the final step to 3.4 mL/hr began Sunday 15th October. On most days since 4th August a FitBit monitor has been attached to her right leg. The FitBit charts indicate that stronger leg movements tend to occur earlier in the day after each step change, but this is inconsistent from day to day.  Following the commencement of each step [She] tended to experience an increase in discomfort/tingling/pain in both legs for perhaps a week or so after which she had learned to tolerate the new level of discomfort or perhaps the discomfort had eased. Since Sunday 15th October following the final step to 3.4 mL/hr she complains of increased  leg stiffness, the right leg feels funny/tingling below the knee, the left leg gives her "gyp"/annoying sensations from about mid-morning and the left foot tends to turn more. In the past her activities were restricted from about 2PM; now that begins at about 11AM. She needs to keep her legs raised to gain a degree of comfort from mid morning.

Dr F said "reduce Morning Dose if dyskinesias start to get worse before lunch". Since I don't have access to do that can you please look into the matter and advise.
[Her] next PD Clinic is on 22nd November. "

There was no acknowledgement to the above email, so I wrote a letter with FitBit charts to Dr F


############################################################################

Notes about [Her] November 6^th 2017

Observations of [Her]

. Sometimes feels breathless

. The right leg often has more dyskinesias than the left

. The toes of the right foot often arch upwards and their tendons are very obviously taught

. Unable to stand without assistance

. Unable to walk

. Usually the right leg has greater dyskinesias then the left

. A Sara Stedy transporter is needed to transport her between bed-toilet-commode-wheelchair- recliner and her body bounces up and down violently while being assisted getting on and off

. Both feet and legs are often hot or cold but not necessarily at the same time

. Most hours of day and night needs a fan blowing on her

.Each morning she uses a powered pedal machine for 5-20 minutes and has 3 light ¾ hour exercise sessions each week

. The right leg has a larger diameter than the left, at mid thigh right 41cm, left 38 cm

. Bowel motions have been stabilised with 3 heaped teaspoons of BeneFiber in fruit juice daily

. While seated on the toilet or commode, bowel motions are usually not detected

. Mouth fills with very thick saliva when some brands of tooth paste are used eg Biotene

. Unable to chew or swallow hard particles of food; eg chopped nuts, tomato skin

. Frequently thinks shapes such as leaves to be birds

. Eyes are very sensitive to light, often wearing sunglasses inside the house

. Unable to remember personal names.

. Often asks what day it is

. Very difficult to distract her from a task in hand, eg to begin eating a meal when involved in an activity

. Easily distracts herself from a task such as eating a meal to begin another activity such as hand sewing

. Often in early afternoon she quickly has a need to lay down on her bed.

. Frequently counts objects, sorts the contents of cupboards, drawers and boxes

. Sometimes her eyes “go in and out of focus”

. Unless she can see her feet she does not know “where they are” or if they are on the ground

. She senses that glasses are still on her face, or shoes on her feet, after they are removed

Thur 3 Aug 2017

Appointment with Dr F in his rooms. Advised increasing overnight flow rate by 0.2mL/hr every fortnight, to a maximum of 3.4 mL/hr. Current rates are 5.4 and 2.2 mL/hr; MD 8.0 mL.

A FitBit Alta is attached to [Her] right leg (which is seen to “shake” more than the left) most days and nights when convenient and removed when showering but there were problems resolving synchronising issues until mid August. Below is a collection of FitBit recordings taken between August and November 2017.

Note that the Y axis changes its scale to cope with a large number of “steps”. FitBit describes the step bar colours as: Yellow – light, Brown – moderate, Green – intense.

Frid 4 Aug 2017

Increased overnight flow rate to 2.4 mL/hr

Sat 19 Aug 2017

Increased overnight flow rate to 2.6 mL/hr

Sun 3 Sep 2017

Increased overnight flow rate to 2.8 mL/hr

Sun 17 Sep 2017

Increased overnight flow rate to 3.0 mL/hr

Sun 1 Oct 2017

Increased overnight flow rate to 3.2 mL/hr

FitBit problems between 25^th Sep and 12^th Oct prevented recording “steps”.

Sun 15 Oct 2017

Increased overnight flow rate to 3.4 mL/hr

PLEASE NOTE THAT, BY MISTAKE, THE CASSETTE WAS NOT REPLACED DURING THE EVENING OF 28TH OCTOBER

ALSO NOTE [HER] COMMENT!!

Thur 2 Nov 2017

Trialled reducing Morning Dose from 8.0 to 6.0 mL by substituting 3 only Bolus doses.

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Note that in the later FitBit graphs I substituted 3 only 2mL Bolus doses as my only way of reducing the Morning Dose (MD) which has been programmed at 8.0 mL and which I have not been told the security code to modify that pump setting. So substituting 6 mL of Bolus doses seems a reasonable step to take.

She has begun another project to make a container bag for her Duodopa pump. The first attempt was too small because only the width of the pump was taken into account, not its thickness. This morning as she worked on a larger version of the bag she raided the fridge for a slice of Xmas cake (of the slices I bought for her at Coles) and I found her re-arranging the contents of the fridge. After some mild words I positioned some fridge items to keep her happy and she returned to the bag under construction.

In recent weeks we have bought her new tops and trousers at KMart and Rockmans. Almost always she finds problems such as elastic, ribbon ties. size and brand labels and unwanted decorative buttons. These items are usually snipped off before double checking that the sizes fit. Hanging threads on the insides at seams are also cut off. Older pairs of trousers have had their elastic cuffs cut off. Some of these modification projects have been completed, many haven't. Remains an incomplete project.

Similarly with the shoes we have been buying  for her at KMart; soft, light, flat heeled with velcro or elastic straps.  Perhaps thet are cheaply constructed; she finds loose threads on the edges of the velcro or elastic straps which are picked or cut off until the straps are completely removed to be replaced by elastic strapping and buttons; also the edges of the shoe uppers are trimmed with satin ribbon. I'm unsure whether any of these reconstructions have yet been completed. Remains an incomplete project.

Months ago two very cheap rag dolls were bought at KMart; she intended to dress them. A week or so ago she used the sleeves cut off a long sleeved nighty (too hot) as a dress for each doll. Remains an incomplete project.

Fibres and threads from these projects usually end up on the floor, usually not vacuumed up with the new hand held VAX machine bought for such matters. Consequently threads stick to wheels on the wheel chair etc which she every so often cleans off.

Last weekend we bought a small 12 drawer roll-about to store needles, pins and other small sewing items, rather that the many small plastic boxes in which such are now kept and which need searching for in cluttered cupboards. Yesterday she began storing chocolates in those drawers.

We had regulated her bowel motions but late yesterday after we returned from an appointment with the eye specialist she sat on the loo for 90 minutes before agreeing to get off. The 4 hours round trip to the appointment without needing the loo at all may have disturbed matters. Her eye pressures were, I think, 14 and 16. Her eye lubrication was changed from Liquigel to Celluvisc to deal with eye focusing and light sensitivity problems due to dry eye issues caused by her PD.

Some years ago a previous GP diagnosed me as having experienced TIA's (Transient Ischemic Attack otherwise known as a "mini-stroke"). Scans confirmed this. Last week I was discussing something with one of the Wild Dog carers when I lost the thread of my ideas and then could not remember her name. During the last few days I have noticed that I am making a lot of typing errors, so I made an appointment to see our GP on Monday next. Perhaps the typos are simply tiredness.

Since I began the additional blood pressure med early morning and evening blood pressure readings on my Omron have been 120 +/- 5 and 130 +/- 5 rather than 150 and above.

Such is life.

Chapter 472 - "I've Been Wanting To Feel Like This For A Long Time"

That's what she said "I've Been Wanting To Feel Like This For A Long Time" at 1930 on Sunday 29th October, the day following the Saturday night when I went to sleep without noticing that I had forgotten to replace the cassette  on her Duodopa pump early that evening. She herself had gone to sleep about 1915 before the Wild Dog carer had left. So around 0100 on that Sunday the pump's cassette ran out of medication; between then and 0600 I woke a number of times to her snorting, snuffling and snoring as well as speaking, sometimes quite distinctly and much more than at other times yet I failed to realise anything was amiss. Although she was sluggish at 0650 when transported from bed to toilet (I did not wake her as usual by 0615 when replacing the cassette and changing pump settings) the rest of her day was quite reasonable and we went shopping. Neuro F. had said to raise night time flow rates in 0.2 mL steps, stopping at 3.4 mL and report should dyskinesias extend into the morning; the FitBit on her right leg had indicated this began to occur at about 3.2 mL. I sent an email but there has been no response. The PD Clinic at West Beer is in 2 weeks so I have made my own adjustments and will inform them then.

Today we intended to be at a birthday party but neither of us feel up to it so I just rang and cancelled. She is very uneasy about continence matters and my doctor has just started me on an additional blood pressure medication and I am not up to driving.

Other comments about our situation are postponed till another time.