Chapter 323 - Annus Horribilis Anus

Having avoided Latin during my few years in high school is my only excuse for translating my heading for this chapter as "Horrible Arse-hole of a Year". The Latin word "Merde" could be added although doing so destroys the symmetry of my Latin phrase. QEII is obviously a Latin scholar for she took care to spell the word for "year" correctly when she voiced her memorable quote some years ago. Merde happens.

On Xmas day I wheeled her to an empty house in our village where permission had been given for we waifs without local family to share the gluttony of the season. A pleasant meal it turned out to be. More resident "strangers" than long time residents as we are, so a way to meet some of the new people yet I can't remember their names, only some of their odd social manners; but pleasant people all the same. Our host took up a musical instrument on which he played a Xmas carol after handing out song sheets, but since no one sang along he played no more. A very elderly lady said grace, something very formal ritually voiced at army and navy messes, since from her conversation she obviously has a blue blooded military background. One question she asked was "when does it rain here?" as she is recently from an island state whose weather mirrors the mother country. Her prayer was answered that same afternoon when I needed to walk the few hundred metres back to our place in the rain, returning in the car to collect my PWP who had sat through the meal on her blue walker/wheel chair.

We came home from Xmas lunch carrying a quantity of left-overs. Then on Boxing Day we visited Friends around the corner for lunch so I had no need to eat that evening but she made herself a sandwich, Dagwood in nature, of the leftovers brought home on Xmas day. Boxing day began with us rising late and not restarting the Apo pump until 0913am, well into the OFF time prior to her 10am meds, meaning showering and dressing were very difficult. The following paragraph is portion of an email I sent to a close relative on Friday.

"A weird thing happened last night. [She] woke me at 00.15am because she was unable to raise herself enough to even sit on the side of the bed on the way to the commode. Then after sitting on the side of the bed for 1/2 an hour by which time she had pins & needles from her feet to the top of her head I transferred her to a chair using a new transfer belt we just bought on the advice of a physio and an OT. While on the chair her feet were supported on 3 pillows for comfort, trembling all the time. Suddenly at 2.11am she felt lovely and free, able to move all of a sudden, was yawning (whether due to medication or tiredness is unknown). A classical ON event! At both the beginning and ending of this 2 hour period I checked the Apo pump readings which were roughly what I calculated they should be so there appeared to be no interruption to the infusion rate. I checked the infusion point which was quite dry, clean and no sign of blood. Her last oral meds had been at 10pm about 2 hours before this period of immobility. In evaluating last night P admits to having a "chicken sandwich" around 9pm; I noticed it in passing but only now I'm told it consisted of two rounds of bread, butter, lots of chicken pieces, cole slaw and chutney. All because we spent most of the afternoon around at [Friends] helping them devour their "leftovers" so last evening I didn't prepare us a meal; I had some yoghurt and some fruit, P an ice cream. So this seems to be a classic case of delayed absorption of meds due to slow processing of food late at night. Some months ago a physio advised against having Metamusil with the evening meal because doing so will encourage nocturia; unfortunately, her nocturia persists even though the Metamucil is now taken at breakfast time."

My notes are more detailed:

0015 Woke me, very stiff, unable to raise herself off bed.
0024 Pump reading 08.21
0148 Sitting on side of bed pins & needles from feet to head
0150 Needed belt to transfer her to chair, feet on pillows
0211 Feels lovely, can move all of a sudden, yawns, can move all of a sudden. Pump 06.32
0217 Got back onto bed while I removed chair & brought back Commode. Rose from bed & sat on commode without help., then rose from commode & got back into bed.
0440 Can't move again or rather sit up. {Using} belt up & onto commode. Just tremors, no pins & needles
0446 Feet beginning to band, able to move feet whereas before just stiff with feet on 3 pillows
0449 Belted transfer back onto bed
0557 helped onto commode where [she] had meds then back into bed
0650 Helped onto commode after sitting on side of bed about 10 minutes trying not to wake me

Thus a typical night passed and a day began.

I had intended to video her difficulties during Friday but my weariness was too much. And I took no notes either, except that I recorded the number of 250ml glasses of water I gave her and the fluid volumes she voided because I wished to determine the volumes for 24 hours beginning Saturday morning, hoping the numbers may be of interest to medical types. I made the following notes for yesterday Saturday:

0755 Pump ran out
0811 Pump on 24.05
1005 BP 127/63 70 Tingling from toes to waist
1007 Head tingling
1220 Needed loo, left leg numb, unable to rise onto wheel cahir, in bathroom lifted onto commode, only 100ml
1300 wants to get out of wheel chair, can't pull herself out of chair by holding cupboard shelves. I lifted her up by the new belt but she makes no attempt to support herself by her legs, returned into wheel chair. I made decision to return to 1mg Sifrol [3 times per day in an attempt to give her more ON. The temptation is to increase Apo but I must not until advised] rather than 0.5mg. Her feet & legs numb, no feeling
1320 On pedal machine in powered mode [in the hope that passive exercise may induce normal sensations & movement in her feet and legs]
1330 Toes & soles of feet tingling
1335 Tingling sharper & now halfway up her calves
1345 Tingling to knees but not as strong as in feet
1350 Stopped pedalling because feet feel too tight. Touching feet on pedals gave no feeling
1400 Initially no feeling in left big toes, feeling in other toes and top of feet near ankles. Meds 1x Sinemet 200/25 1x Sifrol 1mg 1x Deralin 40mg 2x Motilium. [Noted that chemist is providing Sandoz which contains "carbidopa monohydrate" so I ask is this the same as in Sinemet? The carbidopa in Sinemet is also monohydrate]
1445 Began to feel "free and ON"
1450 wheel chair into loo onto commode, piddled, then onto loo for poo
1500 Standing stooped [hangs onto fireman's pole while I pull up pants]to return to wheel cahir with my help then onto recliner - seems to have brightened
1710 Needed loo, walked to bathroom [pushing trolley] was stuck immovable to get onto commode - did only 50ml, wheeled back to recliner on blue walker
1725 Both feet tingling
1800 meds 1 deralin, 1 Sinemet (Sandoz) 250/25
1825 Had to sit on loaned wheeled commode, attempted several places to have her lift herself to pull her pants down but had to do so in bathroom. Took pants of completely after piddling & dressed in nightie {seated on wheeled commode] Piddle 250ml Very dyskinetic.
2050 Into bed.

Sometime during the day I must have strained too hard attempting to transfer her between recliner/wheel chair/ blue walker/fixed commode/mobile commode because late afternoon I noticed a "floater" in my field of vision; a small dark dot in my left eye where there has been no sign of floaters of any sort since the macular operation there several years ago. Being dark and circular I assume it was blood, only one and I have not seen it today. My forearms are tender whenever I rotate them or manipulate my fingers, especially the left arm, which seems to be the arm I mostly use to help her. The new assistance belt is not much help; she is afraid of it aiding her to fall and I find it causes her clothes to slip upwards and becomes loose, she panics and attempts to grab things, such as the wheelchair, holding on fiercely making it difficult to seat her. We need some training with it, but the physio will wish to do that when she is ON, not when she is unable to support herself with her own legs and feet.

Fluid Intake & Voids for Saturday to Sunday morning
0720                        250ml piddle (first of the day was 300ml at 0535 prior to 0600 meds)
0830 250ml water
0900                        poop & piddle (piddle quantity unknown)
0915 250ml water
1010 250ml water
1105 250ml water
1220                        100ml piddle
1450                        110ml piddle
1515 250ml water
1715                         50ml piddle
1730 250ml water
1830                         250ml piddle
1835                         140ml piddle
2030                         130ml piddle
2100                         150ml piddle to bed
2200                         90ml piddle  and asleep
0000                         200ml piddle
0348                         150ml piddle
0430                         150ml piddle
0600                         125ml piddle

Total fluid intake 1500ml
Total fluid void   1895ml

These figures indicate borderline nocturia polyuria with 37% of void volume and 3 voids during sleep hours. We have counted up to six times some nights. She is usually referred for urine tests, antibiotics then no follow up. I want her to take sedatives on going to bed, anything for a short term rest.

And how about today? Perhaps better than yesterday, except that tiredness is accumulative.

What a deteriorating crap year 2013 has been.

Chapter 322 - Too Stuffed to Type

One has to be motivated to post entries; when matters are poorly, the weather is hot, things are going wrong, I'm tempted to ask who gives a damn. So I'll ask: Who Gives a Damn?

Must have been the week before last she attended a "taster" session at a physio organsisation that provides the LSVT BIG programme; an exercise regime of extreme movements designed for Parkies. Should you wish to know more then search on line and view clips on YouTube. Intense. Expensive. Concentrated in time - four one hour sessions per week for four consecutive weeks. All at two locations in Hot Air City, the closest about 90kms away so we will be commuting again about the same distance as we did when working in Batman City so many years ago. Maybe we will lash out and stay in a motel on the odd night if I am too buggered to drive home. I am concerned she may be unable to cope physically with the exercise. She tried some of the movements to the accompaniment of a YouTube clip I connected to the TV. Part of the routine seems to be movements by numbers, interspersed with yelling out "BIG"; I have tried this while helping her shuffle to and from the loo; yelling out "step BIG!" and will you believe her step lengthens and her feet are lifted higher? No bull; it happens!

We bought her a "Revolutionary" chair (I think that is the trade name for it) which is very sturdy (and heavy) with a rotatable seat with arm rests. The seat can be slid some 100+ mm in a forwards direction. When rotated +/- 90 degrees the seat latches into position, the position for sitting upon or rising from the seat. Once seated, the seat is rotated to face a table or desk then slid forwards and latched. The seat was positioned at the kitchen table where she does a lot of sewing lately. My intention was to carry the chair into her sewing room whenever she wished to be seated at her desk and her laptop. Wishing to avoid injury to my aged self, I bought another chair of the same type.

The wheeled commode/shower chair we have on loan for her from the hospital is too high to readily position her on it; she found it awkward and my forearms suffered attempting to lift her. So the OT came to inspect the situation; perhaps we will eventually receive a new one from the government. In the mean time, we are advised to continue to use our own cheap non-mobile commode and non-mobile shower chair. The OT then checked to see how I managed transferring her bed to commode (which also applies to the  bidet on the loo, although that is easier because of the fireman's pole) and the OT was unimpressed. Advised a belt, not impressed with the small one we have (and don't use). I have now ordered a more appropriate belt. The OT referred us for some physio directed transfer training at the hospital. Also a visit from District Nursing about respite care and the like; a visit resulted and we will be visited by ACAT for her to be assessed for High Level Care. Anyway, the appointment for some respite training took place last Friday; we introduced the very young physio to the vagaries  of PD and were given useful tips in return; we were shown a transfer belt and I have now ordered one. Another appointment was made. As I held the exit door open for my beloved Parky her left leg gave way as it has been threatening to do frequently after the last few months. She fell, tumbling and rolling forward as I let the door go (bad move on my part), ending up in a ball on the concrete. A gauze door also became entangled with us. Within seconds we must have had a dozen physios and support staff in attendance. She had no scratches, broken parts or bruising; she would make a fantastic drunk or clown. The professional helped her up, made recommendations about the height of the handles on her walker, retrieved some Allen keys and made adjustments, then aided her to the car which I brought as close as possible. Later that day she was called to find out how she was, and the OT wants to place her into the palliative care hospital for a few days; for what reasons she was not told and/or did not ask; she will be called about this after Xmas.

Last Thursday another appointment to see Polly the PD nurse in Hot Air City. I seem to have caused her some concern. After our last visit we had agreed to reduce the Sifrol intake by 0.5mg from 1.5mg three times a day back to the 1.0mg three times day she had been on at the beginning of the year. We had already disposed of the Comtan earlier. Since there were no marked changes in her symptoms/side effects/complications after some days I decided less is better, so had her drop the Sifrol back to only 0.5mg three times each day. Polly the PD nurse then explained DAWS, otherwise known as Dopamine Agonist Withdrawal Syndrome. Back home I consulted Dr Google to learn that some Parkies, on attempting to reduce the quantity of Sifrol in their witch's brew of medications, suddenly suffer awful complications which persist until Sifrol is returned to its prior quantities. In other words, the Parky patient suffers withdrawal symptoms after having become addicted to the effects of Sifrol; in other words, similar to a drug addict attempting to give up their addiction. Since the media frequently highlights the dangers of Dopamine Agonists  (read Sifrol and the like) for patients that suffer impulsive and compulsive disorders with gambling, spending and sexual behaviour I am puzzled why there has been no media coverage about the consequences of attempting to remove the offending medication. I believe many "practitioners" are unaware of DAWS. The learned papers I found on line were written in 2010. My Parky was introduced to Sifrol by her local GP in 2008. Also, the Apomine she is now using is a Dopamine Agonist. Catch 22. In the meantime, I will refrain from encouraging any more step changes in reducing her medications, what the professionals call "tapering".

We thought we were embarking on a lonely Xmas season. A couple in our village came to the rescue and organised a chicken lunch at $15 each. Just after I paid our contribution, neighbours around the corner invited us for Xmas dinner, which we had to sadly decline, but are invited to their place on Boxing Day to help dispose of the left-overs. She told her 90 year old aunt that we were unable to attend a BBQ this past Friday with the Ugly Sisters and others; then also our son and family who we would have visited on the way through. Then yesterday a call from our son to suggest they come down today and perhaps we eat at the Club. Which we did; we arrived early, commandeered several table and chairs then enjoyed lunch and a bit of frivolity. I wheeled her from the car park into the restaurant in her walker/wheelchair in which she remained the whole of four hours so by 3pm she was very uncomfortable so we called it quits; we to home and the family several hours back to their place. Sometimes these spontaneous gatherings are much better than the planned.

Even so, 2013 has been a lousy year.

Chapter 321 - When is the End of a Tether?

A trip to Hot Air City last Monday for Polly the PD nurse to remove bolus settings on the Apo pump and  adjustments for 6ml of Apomine to be infused over 24 hours, rather than 7ml with 10 bolus. The bolus setting was removed because the initiation of a bolus caused bursts of tingling and pain in her legs, to such an extent that she avoided pushing the bolus button and therefore her actual daily infusion was less than 6 or 7 ml.
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NOTE: A section of text has been deleted from here because my arithmetic and conclusions were incorrect
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Our bank has alerted us that signatures will no longer be accepted for our credit/debit cards. I have been using PINs for ages but because she is never near a bank nor does she use on-line banking on those rare occasions when she has used a credit card she has signed. So Thursday was the day to sort out PINs with a visit to the bank. On the way I collected another month's supply of Apomine from the hospital (only place that is permitted to dispense the stuff) and a visit to the OT to see what can be done about the commode they supplied; she remained in the car. At the shopping centre I drove around the car park until a disabled slot was available near the doors. From there she pushed her walker some 100 metres before sitting on it while I took a script for Sinemet into the chemist. Then another 100 metres out of the shopping centre and across the road to the bank. There we had to queue, although she sat on her walker. While waiting patiently, I became concerned because the counter for the type of service we required was at elbow height, meaning she would need to stand while setting up 3 PINs and signing paperwork; clearly impossible. Fortunately, a bank person came along and took us into an office where she was able to sit at a desk. While she attended to her PINs I took some $50 worth of coins (she collects the small change I leave on the bedside table) to a teller for deposit into our main account. With that chore out of the way, we retraced our steps to the chemist, she sat on the walker, I collected the Sinemet plus $60 worth of OP-sites for the infusion needles. Then back through the crowds, bumped into a friend who wanted to talk while his wife bustled into another store. I noticed that she quickly became stressed after only a few stationary seconds and we continued to the car; almost there when she began to collapse to the left but able to pivot onto the walker's seat. I then pulled the walker backwards, down a shallow ramp onto the car park surface, round behind our car then down its side (fortunately there is enough space between vehicles in the disabled slots), opened the passenger side door, lowering the window so that she could grasp the edge of the window frame for support. Fortunately, she was able to stand sufficiently for me to push her sideways into the car. So after 4 short distances with pauses in between she had a near miss fall.

In the dark hours this morning I realised how similar the collapse of her left leg is to the prank school kids were wont to do, sneaking up behind another kid then tap the rear of his leg behind the knee with the heal of a hand, causing the leg to buckle. When we woke I asked whether her legs, most often the left, behaved that way and she said it was. How soon before she becomes wheel chair bound?

Polly the PD nurse has asked her to fill in a daily diary. The supplied sheet is limited to a checklist of PD symptoms, dyskinesia, etc., at hourly intervals for 18 hours only which is too coarse. I created a checklist with about 2 dozen "symptoms" at 15 minute intervals. Unfortunately, such an amount of detail is impractical to record and causes too much interpersonal friction. I then bought Dragon Naturally Speaking and an Olympus digital recorder for her to record her symptoms and problems whenever she experiences them. Then recorded audio file is then transcribed by Dragon and does a reasonable job of it. I have been surprised that she has difficulty prefacing any comment with the time of day then limiting her words to comments such as "left foot tingles" while holding the microphone end of the recorder near her mouth. The only onerous thing I asked was for her to say "full stop" at the end of a sentence and "new line new line" to format some white space between comments in the resulting transcript. Following much frustration yesterday, she has decided to scribble her observations onto a scrap of paper then read the comments into the recorder. Perhaps she will become adept in its use, although I suspect the whole will just be another toy for me. And I notice when she is in pain, dyskinetic and the like ticking boxes on a diary, making notes or speaking into a recorder are the last things on her mind and such is to be expected. However, for me to pester her with questions and attempt to interpret her sensations in my own words is inaccurate and very tiring for both of us.

As it is now, we are both very tired, our lives are reducing to just PD related activities.

Rather than experience the problems of last Sunday at the Club, she was relieved this morning when I said "Let's stay home today" even though she had said she would remain seated on her walker to save the difficulties of the transfer from chair to walker; transfers in and out of the car are another matter. Perhaps another minor activity is being closed to us.

Susan Greenfield in "The Private Life of the Brain" quotes anonymously "Experience is what you get when you don't get what you want."

Chapter 320 - A Glass Half Empty

Reader you may never notice; my chapter titles are cryptic descriptions of my view of our situation post by post. Mostly the titles reflect a rather depressed outlook, mine more than hers.

Last Thursday we had an appointment with Polly the PD nurse and this time I was hopeful that the Apo pump setting were to be adjusted; infusion rate up, size of bolus down, to provide a stronger continuous dose while allowing smaller, and more frequent, sized bolus shots. when she first began with apomorphine (or Apomine or Apokyn to use the marketing jargon), the original bolus size seemed to have negligible effect on her until several weeks ago she was reacting badly to them, to the extent that she refused to try a bolus to relieve stiffness and rigidity because the side effects of excessive tremor, muscle pain in her legs, tingling sensations that began in her toes then crept up her legs to the anal-genital area inducing feelings that she needed to use her bowels amongst other things. All this was torture to her.

So Polly the PD nurse asked me to raise the Apomine to 7ml (was 6ml) with 13ml saline (had been 14ml) for the 24 hours beginning Friday 29th November and and she adjusted the pump settings appropriately and to allow for 10 (I think) smaller bolus doses. Which meant the infusion rate was low for the remainder of Thursday since we had not come supplied with Apomine other than was already in the syringe on the pump.

Then we were told that the Considerate Neuro had discharged her back to the private practice neuro that had referred her in the first place. No reason was given and perhaps I was too confused to ask why, except to ask about the appointment letter that the hospital machinery had sent  specifying an appointment with the Considerate Neuro on 19th December. "That will be cancelled but you will still see me on that day" said Polly the PD nurse. Thank goodness for that I thought.

During the long walk back to the car park she needed to sit and rest 3 times. Along the way she sadly commented that "another one (neuro) has given up on me."

Next day a family member rang, enquiring about visiting their aunt prior to Xmas. She was told we could not come. In talking about not very much she mentioned that she had been sewing, making some small quilts for the stall at Respite. In closing the call, the other one said "Well, if you're sewing you can't be too bad." DO YOU PEOPLE UNDERSTAND HOW CRUEL YOU ARE?? There is little she can do except solve puzzles in her puzzle magazines and persevere with sewing and infrequently a little machine embroidery in the time she has available to use her hands? And even then, she takes much longer to complete a sewing task than she once did, her hands and fingers are slow and she often has to pull stitching apart because of errors made, repeatedly. She can't shop any more on her own and even when I assist her she quite quickly needs to sit down, She can't get out of the car (old or new) on her own, she is only able to spend short periods in the kitchen, she is unable to sweep or vacuum, she is unable to hang clothes on the line, she can't mingle in social groups, she has to avoid crowded shops, restaurants, homes, theatres, your houses are fearful places for her (they were built with steps, narrow hallways, narrow doors, sloping driveways, cramped bathrooms etc etc), she has to move around her own house shuffling behind her walker, she frequenting calls for help to sit on the toilet and to get off it requiring help to pull up her pants, very rarely can she stand under the shower but needs to sit, often needing help to wash and dry her body, she is unable to walk around shopping centres without the help of her collapsible walker/wheelchair on which she often needs to sit AND she has minimal contact with her grandchildren. How about needing a bidet because she has great difficulty wiping her bum? She must use  "disabled" public toilets because she needs my assistance so when we travel fast food outlets are sort after but not necessarily for the junk food. She has been told that in her present condition not to attend the weekly "Falls Group" at the local hospital. Her Tuesday Respite Group are becoming concerned about her, although many of her fellow attendees have more serious difficulties. ALL THESE ACTIVITIES YOU TAKE FOR GRANTED AND PROBABLY WISH TO AVOID DOING SOME OF THEM BECAUSE MANY ARE DRUDGERY.

She had been referred to the Considerate Neuro at Hot Air City Hospital for his expertise with apomorphine. From March this year when she first attended Hot Air City Hospital her conventional medications were increased with Comtan 200mg 3 times per day and then raising Sifrol by 0.5mg to the maximum daily amount of 1.5mg 3 times per day, then after she had agreed to an apomorphine challenge and then commencing infusion, requested that she cancel her 10am meds (350mg L-dopa equivalent) and adjust the other medications times across the day. Elimination of her 10am meds caused her excessive stiffness and freezing and she was hungry waiting for her next dose well before the next dose was due now that they were 6 hours apart (had been 4 hourly). A short while later we reinstated  the 10am meds and began removing Comtan from her regime. Did we have "approval" to do this? If I remember correctly, the Considerate Neuro was away so I advised the system by email. The last appointment she had with him was a rushed one because the day's appointments were running late and he needed to be somewhere else within 15 minutes or so; a non-useful meeting for us.

At a subsequent appointment I learned that the professionals regarded Comtan as increasing the effective level of L-dopa doses by some 33% when they calculated the effective dose rate of a number of L-dopa and agonist medications taken by a patient. And Sifrol has an equivalence of 100. Way back  in March this year at her first appointment with Polly the PD nurse she was told that her L-dopa intake was very high (by my calculations 1800mg), yet Comtan was added and Sifrol was increased before introducing her to apomorphine. At that time, by my calculations, she is taking the equivalent of 1650mg x 1.33 (Comtan effect) of L-dopa, i.e., 2195mg!. Admittedly, she was told to remove the 10am meds (350mg) which we had to countermand yet no other adjustments have been advised. I calculate her current L-dopa equivalent intake, including apomorphine, is now 1700mg.

Enough confusing arithmetic. Last Thursday I checked that the new chair ordered for her has not yet arrived. After the hospital appointment, I drove to the physio place that offers LSVT BIG therapy even though they had not responded to my email. I made an appointment  for a "taster" session of the therapy, something I thought a good idea in case she is unable to cope with the exercise.

She avoided taking any bolus doses during Thursday and through Friday and Saturday. Her fear of excessive tingling and pain from her toes to her bum area was too great to experiment with the smaller bolus doses. Saturday was a reasonably relaxed day, needing to be rescued off the loo only twice. I applied a just delivered vibrator to her feet and that may have helped her. However, at 1.15am this morning she woke me while she was perched on the commode; she was too frozen to return to bed and wondered whether she should try a bolus; I agreed. What follows are my notes following the bolus:

0150 Pump reading from 15.21 to 14.57 hours remaining (0.64). Fine tremor in feet.
0152 No changes.
0153 Sharp tingle in left toes
0154 Sharp tingle in right toes as well. Tight feeling left heel.
0155 Pressure in anal area.
0157 Uncomfortable on the commode so back into bed.
0200 Tremors up both legs, tingling in feet continues. Yawning.
0201 Feet "freeing up". More yawning.
0202 No visible tremor of bed clothes.
0203 Asleep.
0213 Woken by strong foot tremors
0214 Tingling up legs to anal area.
0215 Calming down
0216 Tremors ceased, tingling lessening to feet only. Yawning.
0219 Asleep again.
0313 Shouting, talking in sleep for a few seconds, she did not wake.
0525 Needed assistance onto the commode.
0605 Commode again.
0645 Onto commode again without assistance.

After this I soundly slept while she rose made her bed and emptied the commode.

At 9am I rose, finding her in her recliner in the TV room. She was feeling stiff and OFF so thought she would have another bolus. So the story continues while she is in her recliner with her feet raised.

0905 Pump reading from 07.44 to 07.18 (0.59? I must have misread the numbers) foot tremors and toes tingles.
0906 left foot turning.
0908 Soles of feet tingling.
0909 Left big toe strong tingling, right toe almost as much.
0910 Calves begin to tingle, both feet tingling all along to heels.
0911 tremor only in left foot.
0912 Both feet tremor free, then right began again.
0913 Right big toe painful.
0914 Left foot still, right foot tremors.
0915 No feet tremors, although right tingles while left is stiff, and calves tingling.
0917 Both feet tremor, left toes want to point downwards but is stiff.
0918 She wriggles left foot to ease stiffness.
0919 Raised knees to ease tremor.
0920 Yawning , slight tremor right foot.
0924 Yawning, strong tremors in right foot, left foot tight, then right foot is tight.
0925 Strong tremors both feet, deep yawns. I think her speech is clearer.
0930 Both feet very painful.
0931 Feels funny in the tummy.
0933 I applied the vibrator to her feet.
0935 Both feet still, but both sore behind the toes.
0936 Slight tremor in left foot, tingling feels like ants in her feet.
0937 Wild tremors in both feet.
1050 Pump off 05:33, infusion needle removed, dark blood from infusion point, covered with small band aid. Showered.
1115 Pump on 31.27
11.30 To the Club for lunch.

We enjoyed a light lunch.

12.39pm she decided she needed a bolus. Pump readings 30.04 to 29.40 (0.64)
13.03 Hot & sweaty, when her feet touched the table leg pains shot up her legs.
14.05 Usual meds.
14.30 to 15.00 She was unable to stand.
15.15 She was unable to place weight onto her feet to stand, was unable to place "nose over toes", pushed the table away, wanted something to grasp to pull herself up, my arm was not good enough to assist her onto the seat of her walker, even tough it was right beside her chair. Became bothered that there was nothing beneath the chair seat to support her (there were steel bars), wanted me to bring the plastic sheeting she uses on the car seat so she could slide off the chair, I became very angry, threatening to call the ambulance to cart her off to hospital (I am sure this is the first time her disability has angered me). Eventually, with our left arms linked I was able to lift and swing her onto her walker seat. She had no difficulty getting into the car or out of it once we arrived home. Any thought of grocery shopping was abandoned.

Since arriving home (now 20.36) she is in reasonably active and now after we ate she has returned to some sewing. ..... I spoke too soon, she just called on the CB for help. She has taken herself to the bedroom, changed for bed and is unable to decide what to do. Her feet and legs are troubling her; she ponders whether to have a bolus, decides against the pain and tingling. I make no comment. We decide she may be better off in the bedroom, either in bed or on the chair. She decides the wheel chair may be better in case she needs wheeling to the loo. When I return with the wheel chair she is unsure why she thought it a good idea until I remind her. I set up the new DVD "Call the Midwife" for her to watch while she counts out her pills for tomorrow.

So a glass half full or half empty? A project to improve her quality of life with apomorphine half complete or hardly begun?