Chapter 295 - Just a Week

We were ready for her to go to Physio on Monday afternoon, except she kept delaying, till she decided she was too stiff and pained to go, so rang and cancelled. Afternoons are far from her best times these days, although I vaguely recall until recently we avoided outside activities, postponing appointments and the like to afternoons. The opposite now seems the case. For instance, the earliest suitable appointment to see Dr Flower to jab her with Vitamin B12 was at 10am on Tuesday, even though that made her late for respite again. I parked across the street from the surgery and absent mindedly helped her out of the vehicle before I retrieved her walker from the boot (I usually assemble the walker first so that she has something to hold on to) and when I went to get the walker she said "Don't worry about it, I can do without." She took her 10am meds while waiting outside Dr Flower's room. Dr Flower complimented her on her walking unaided, seeing that as an improvement. I was tempted to invite Dr Flower to see her mid afternoon for comparison with mid morning.

Now almost mid-winter, we do without heating, although she is tending to wear a light cardigan. Just before 2pm meds on Thursday, she asked for help to remove the cardigan because she was sweating and very hot (her blouse was damp). So there she sat in her TV chair, reading, wearing only a light blouse and slacks until an hour or so later she was able to resume her sewing. She said she was tremoring so much, making herself hot. Later she replaced to cardigan.

I am concerned that she is experiencing cognitive difficulties. I think I mentioned her problems making the quilt where she worked for hours then had to un-pick her work and begin again and she seemed to be doing the same work over and over, although I did not too close notice. She has been having difficulties opening embroidery files to transfer to her Janome 10000 embroidery machine. I confess that the procedures are messy, although reasonable straightforward. Part of her problems are due to her never having really appreciated the relationships between folders, files and disks. Also she needs to use several applications for the embroidery work and with the march of time the embroidery machine is no longer supported later operating system so her old slow laptop is used as an interface to the machine. Then to save her the physical difficulty of plugging USB sticks into one laptop or the other, I set up a network drive to provide a pathway between her two lap tops, one on each side of the room, the old lap top next to the embroidery machine. She uses two software applications, a Janome one for the native format of the file type required by the embroidery machine and another (Buzz) for cataloguing and file editing. To my mind the whole mess is reasonably straight forward and if she performs tasks by rote she has little difficulty, yet the last week or so I have frequently been called, usually hours after she first experiences a problem, for which she seems to keep performing the same incorrect procedures over and over, to help her. Maybe we need to buy a new embroidery machine compatible with the latest operating system, at least that will remove some of the file transfer issues. However, now that she is showered and dressed I must help her resolve a problem she left last night, edited some files, saved them in the obviously incorrect format and then couldn't understand why the embroidery machine would not accept them. I am bothered that once a problem develops for her she seems unable to think laterally enough to escape the bind she is in. I expect too much of her.

Chapter 294 - Muddling Along

Today was Physio at 2:30pm at the local hospital; as I was putting on shoes in readiness she said she may not go, she was trembling a lot, her steps were shuffles as she went to the bathroom, at my coercion she said "Give me 10 minutes"; this at about 2:15pm. By 2:30pm she decided she was not up to it, so I passed her the diary with the phone number in it to let Physio know while I walked to the hall for our mail.

One afternoon last week we intended to attend a musical event at our hall; shortly before we were to go there she decided she was incapable, so I went on my own.

At her appointment with Dr Flower at 10:15 last Tuesday (running some 20 minutes late) she was in reasonable condition seeing that her meds had been taken at 10am. Her blood test indicated that everything was fine except that her Vitamin D and B12 levels were down; the advice was to take two rather than only one Vitamin D each day and a prescription was written for Vitamin 12 ampules, to be injected once each month for 6 months after which another blood test will be made. It seems Vitamin B12 does not survive oral intake. She has her first injection at 10am tomorrow.

From time to time she mentions that her throat is congested although there is no coughing. About 1pm last Thursday her throat thickened to the extent that she said she had difficulty breathing, I gave her an ice cream which seemed to help.

Last Friday she progressed to Week 5 of her schedule.

WEEK 5 Commencing Friday 17th May 2013
Friday 17th	Actual Time
06:00		Sin 100/25	Sin CR 200/50	Deralin 40	Comtan 200	Sifrol 1
09:00							Vit C 2x500	Mag 500
10:00		Sin 250/25		Deralin 40
14:00		Sin 250/25		Deralin 40		Sifrol 0.75
18:00		Sin 250/25		Deralin 40	Comtan 200	Sifrol 1
22:00		Sin 100/25	Sin CR 200/50	Deralin 40		Sifrol 1
Panamax 500			Panadeine 500/8

I conducted another "speed trial" yesterday, Sunday, although my other activities caused me to forget a few hourly measurements. Again, the same return trip from back door to front pushing her trolley.

0910       28.84
1000       29.60
1200       31.62
1300       36.94 - she mentioned that her feet were tingling
1450       30.35
1605       28.62 - feet continue to tingle
1755       1.00.63 - yes, more than a minute and she dragged her right foot without lifting it; she said the experience was scary.
1910       27.96

Last night we went to bed before 10pm. Without her knowledge, I turned on the room thermostat to 25C because the room was rather chilly, my intention being to warm the room until we were in bed to watch old episodes of "Heart Beat". Almost immediately she detected the infra red heat from the ceiling (I didn't) and within 15 minutes her cheeks were flushed and she asked me to turn off the heating; I did so.

Most nights now she needs my help once or twice to sit on the commode, which is wheeled to a position beside her bed each night, right where she gets out of bed. There is no need for her to take a step, simply stand and swivel her bottom into position, yet she is unable to do so.

She usually sleeps with firm pillows beneath or between her legs, usually one or two soft pillows behind her back, sometimes of a morning I discover her head at the foot end of the bed. She asked me to position a small reading lamp from her sewing room onto her bed end so that she has better light to read her Mills & Boons by during the early dark hours. She is concerned the light may keep me awake; it doesn't.

During the day we usually don't use any heating, although the weather is decidedly cooler (-7C at 6am a week ago) yet she often has no need of extra clothing. For instance, today I'm wearing a thick shirt with a fleecy vest over the top and corduroy trousers whereas she has on light slacks and a summer weight blouse.

Although she continues to have tingling within her legs, a few days ago she commented that the feelings extended only half way up her calves, although at other times the tingling extends to her hip area.

She continues to be busy with a quilt for her "sheltered workshop" and has been stitching some designs as well. Last Wednesday, we met the Uglies at the club up the 4 lane, had an enjoyable day, and the quilt for the newly arrived was given to its grandmother.

Chapter 293 - A Remake or Two

For a day or two she has been wanting to make bread, so she is in the kitchen at the moment, bread maker pulled from the cupboard, needed some help to retrieve two ice cream containers full of spices from our hall pantry. She says she has enough ingredients for both a savoury and a sweet loaf. I asked her to let me know as soon as the savoury one is available for me to pile large quantities of margarine onto a slice or two. Part of her motivation is the lack of commercial bread in the freezer, although the bother of making home made is not worth the short time it lasts.

She has laboured for several weeks making a quilt for the recently arrived daughter of her niece. Initially there was some panic that the object needed to be completed prior to arrival so I assisted by stitching embroidered butterflies onto panels, although urgency was not so important once the baby arrived. The panels were laid on our lounge room floor for at least a week while design decisions were made as assembly took place. Then our kitchen table was not large enough to spread the partially completed quilt while the backing was added. So I retrieved a sheet of chip board from beneath the mattress of her bed (ages ago two layers of chipboard had been fitted between mattress and base to minimise "hollows" in the bed") and placed that over the table. Then problems arose as she stretched the fabric to keep it flat and in position with bull dog clips. She discovered that some of the triangular cut pieces warped (cut on the cross) causing her to compensate until the whole became very warped, out of square in some places and not others. Until she gave up, a quilt not worth showing or giving to anyone. Another deadline is approaching; next Wednesday when we meet with the Ugly Sisters at the club up the four lane in the high lands. She was intending to start anew until I influenced her to spend a lot of time undoing all the stitching to retrieve the embroidered squares. The job seemed about as complex as putting the quilt together in the first place and took her  about two days, including evenings, excluding her OFF periods. A few of the embroidered squares were damaged in the process and had to be trimmed down in size so the new, now completed, quilt is smaller in overall size and the design is simpler.

The above is a complicated way of leading up to observations we both made. After a morning's work hand and machine stitching she would find mistakes when she resumed in the afternoon. She commented that at times she found difficulty making decisions and I think she may have at times continued making errors while attempting to correct them. Often she would call for help because she was unable to rise from a kitchen chair and move away from the quilt on the table, invariably such assistance was needed within a half hour before meds times, 2pm in particular, since she usually does not begin sewing until after 10am. She commented that even when making fancy coat hangers she had difficulty making decisions, she worked very slowly, unless she was fully ON.

Three days after her next scheduled meds change I time trialled her pushing her trolley from the rear to the front and return.

		Hourly Time Trials
		Back door to front door return
6 May 13	09:10	26.38
	09:45	n/a	needed help dressing
	10:10	49.93
	11:15	29.69
	12:00	29.28
	13:00	31.63	“I'm slowing up”
	13:55	40.06
	15:15	32.19
	16:00	28.3
	17:00	37.56
	18:00	0	not confident to push trolley
	00:00	29.34
	20:10	27.28
	21:15	28.91
	22:00	37.77	tightening up, legs tingling badly

Last Monday her physio session was cancelled at the hospital. On Tuesday she had her respite day at her "sheltered workshop". There was a morning meeting where the "clients" were asked to comment  on the staff and facilities. She made several contributions to the discussion, in particular the difficulty experienced entering and exiting the disabled (I know that is not PC) toilets while pushing a walker because of the force required to overcome automatic door closers.

On Thursday we attended our local PD Group meeting held at our local club. After we both praised the PD nurse, the neurologist and his registrar at the hospital in Hot Air City we were asked for contact details. In a selfish way, I hope they do not become swamped with referrals from our town! She was agreeable to staying for lunch at the club, enjoying her favourite dish of baked vegetables and gravy, followed by cheese cake. We were joined by a couple we know, maybe 10 years older, she with PD, stooped, shuffles, nods off, not much tremor, slight poker machine addiction, whispers. She told my PWP that "he" doesn't understand while he and I were speaking of other matters. We left there to visit her favourite junk rag shop, she needed a new wheel cutter, but we left the club too late, about 1320, so by the time we walked the block she was on the verge of needing to use her walker as a wheel chair. Fortunately there was a bench seat on the foot path outside so I went in to buy two cutters. Then on the return to the vehicle in the club car park she had to sit on her walker outside the office supplies shop where I had to buy inks for both our printers.



Friday evening at 1730 was one of the times she was unable to rise from the kitchen table without assistance after sewing and she shuffled very slowly pushing her trolley to her TV chair. Same thing happened just now at 1330 Sunday.

She continues to be found in strange positions, propped up with pillows, sometimes reading a pulpy novel, in her bed. She recently asked to have some lights on a pole positioned in the far corner of the bedroom, between her bed and the wall so that she can read more easily in the dead of night. Occasionally I wake to hear her talking, sometimes legibly, sometimes yelling, sometimes laughing. Several times she woke me to help her onto the commode, positioned by the side of her bed.Yesterday I woke to find her sitting on the side of the bed, complaining about back ache. I suspect she has become used to the tingles inside her legs, because she only sometimes mentions them.

Some weeks ago when the OT visited to discuss the needs for the commode, she made comment that the heavy padded chair (we got it for free after someone "left" our village "permanently") was not level. The OT counted the locking holes in the legs, saying the chair seemed level. So while sitting on the side of the bed Saturday morning, she again declared the chair not level. Perhaps this is an optical illusion due to the rear legs of the chair being ever so slightly angled. To settle the matter, I got my large aluminium builder's level and placed it across the arms of the chair. The bubble of the level was within the two lines, although touching one line, so it could be said that the chair was not level, but I doubt anyone could detect the slight amount just by eye.

Recently she was unable to stand from a sitting position on her bed without her feet slipping on the carpet as she went to sit on the commode. This problem seems to be resolved by fitting a small soft piled carpet square where she stands beside the bed.

Off to eat some warm home made bread.

Chapter 292 - Events this week

In my dungeon at 2300 on Tuesday last finishing off a few jobs when she called me on the CB radio "That loud bang you probable heard was me falling." She was in bed by the time I got to the bedroom. She had toppled backwards when she was removing her slacks, banging her head against the wardrobe door, sounding louder to her since I had heard nothing, even though there was no music blasting forth from anywhere. No damage to her head, but her bum area was tender for a few days, although there was no bruising. Next morning she complained of aches about her hips.

The next evening, again at 2300, after "making up her pills" for the next day, she was almost unable to push her trolley to the bedroom, stiff little steps, leg pain, needing to sit on a chair partway there.

On Friday at 2200 she had made up her pills and was on her way to the bedroom when she said she "came over strange", light headed and "out of herself". I helped her to the loo and to bed, forgetting to check her blood pressure.

Yesterday, Saturday, at 0830 she ached all over, particularly across her shoulders and back, although her leg tingling may have lessened. At 1730 she mentioned that she is freezing badly, up to an hour before taking her meds, just then due at 1800.

She continues to shower and dress herself, this morning going to the bathroom at 0940, only 20 minutes before her 1000 meds! Freezing? Certainly not this morning.

On Friday she began the next fortnightly adjustment to her meds regime, as follows:

WEEK 3 Commencing Friday 3rd May 2013
Friday 3rd	Actual Time
06:00		Sin 100/25	Sin CR 200/50	Deralin 40	Comtan 200	Sifrol 1
09:00
10:00		Sin 250/25		Deralin 40
14:00		Sin 250/25		Deralin 40		Sifrol 0.5
18:00		Sin 100/25	Sin CR 200/50	Deralin 40	Comtan 200	Sifrol 1
22:00		Sin 100/25	Sin CR 200/50	Deralin 40		Sifrol 1

She goes nowhere without the current schedule in a plastic sleeve because following it requires more than normal cognitive ability!

We have a box of VHS tapes hidden in a laundry cupboard and coming upon them the other day she decided to copy them to DVD and donate the tapes to the Tuesday Sheltered Workshop. Ages ago we bought a DVD-VHS player/recorder to easily do this. Legality of doing so??? Yesterday I attempted to copy a tape but resulted in a burnt DVD with only black on it. I unsuccessfully looked for the manual this morning, so pointed out the futility of attempting the procedure again without the manual, hoping if the manual was forever lost I need not concern myself again with this chore. She set to, finding the manual in another cupboard, bringing it to me in my dungeon (damn!). As she pushed her trolley back down the hall she made a comment that I heard as "man this two things it " or similar words in a structured sentence but with too many pronouns I was unable to link the words into a comprehensive whole. I asked her what she was talking about, more pronouns to my ears, another question from me then "don't worry about it" from the far end of the hall. Is she having problems recalling nouns and am I having problems placing pronouns into context?

Just now she is making finishing adjustments to the quilt for the recently arrived niece, having spent days making padded and decorated coat hangers for the Sheltered  Workshop. Me? I suppose I must read this sodding VCR/DVD manual!