Chapter 359 - Half a Pill for Relief

Each night in the past week she has half a sleeping pill. Some nights I forget to give it to her; she remembers and asks for it. Quite a change from last week end when she was against such an "aid", fearful of being tired and under the weather during daylight hours. She has been sleeping through till at least 0600, sometimes i wake her later. There have been no leakages from her overnight nickers; there have been no stressful early dark hours needs to sit on the commode; I am beginning to feel I have largely recovered from my dose of the wog plus lack of sleep. Of course she wakes sometime between 0200 and 0300 to take meds and I usually get up once a night as well, although we don't seem to wake each other; perhaps we just pretend to be asleep. I must thank the chemist for allowing me to have the packet of Doxylamine Succinate. I assume she will eventually become desensitised to this small dose, perhaps we will both recover from this period of sleep deprivation and she will no longer require sleeping pills.

We have also devised a less stressful routine of attaching the overnight nickers; she lays on the bed, I roll her side-side to get the wrappings of the pants beneath her hips and around her waist. Much less stress than having her stand, stooped, while I positioned the back of the pants, threaded them between her legs then have her get back into bed; the whole being twisted as she lay down again. She is unable to fit them herself.

The above causes me to ask why such peripheral issues to the PD symptoms have to be learned by personal trial and error; although I'm sure somewhere in the murky past there must have been a medical person that suggested sleeping pills. The old Peter Ustinoff look-alike neuro once had her on Kalma (sp?) although I am unsure of the reason, perhaps stress relief. Some patients wish to eliminate taking any sort of pill. All of us tend to resist listening to advice given as  soft suggestions. Over the past year or so, numbers of people comment or ask about our sleep patterns, hours of sleep, quality of sleep. Thanks for asking but someone needs to initiate action and it's not the patient who is in the midst of a slowly deepening bog. Shit, I feel tired thinking about this. The only measurement I have for myself is my performance with Lumosity and Active memory - both are hard work to maintain my scores.

The physio from Wild Dog continues visiting on Wednesdays and Fridays. That is so much appreciated. And the Personal Care ladies from Wild Dog make such a difference to the start of each day. She has long since not complained about me not allowing her to shower before they arrive, maybe plus/minus 10 minutes around 8am. She is now used to an outsider showering and dressing her, has a friendly chat (I hope she does not repeat her stories too much) while I attend to breakfast matters and don't become grumpy and annoyed. Yet when TACP first organised the service we both thought it an unnecessary expense and luxury.

At Hot Air City on Thursday for a routine visit to the neuro who was not bothered that she was taking sleeping pills. We then called at the Independent Living Centre where we investigated wheel chairs suitable for her and our lifestyle (if that's what it can be called).

Our friends from Steel City visited on Friday for an all day BBQ. Although she must have felt restricted at times throughout the day and evening she did not complain until sometime after 8:30pm she said she needed to go to bed. As for me, such a day completely blanks out our normal routine, and although tiring, I feel mentally refreshed. After showing my friend my latest "toy", a Surface Pro 3, she had decided a tablet of that size and weight will be of use to her away from her "fixed" laptop with its couple of screens attached. So such may be a suitable birthday present and a new wheel chair just a necessity of life. I just went to check on her at 11am; she had missed her 10am meds playing with the Surface Pro and misreading the clock on the wall! Such is life.

Chapter 358 - A Week of Tiredness

Last Sunday started it all. I was feeling reasonable after my "man-flu" but that failed to last. That night she took her usual 10pm meds before fitting her overnight nickers at 2220 when I noted her right foot was cold, her left hot. At 2225 I applied some ultrasound to some of the nodules I could feel on her tummy. Then at 2349 I removed the Apo pump and infusion. No meds after that point until we saw the neuros at West Beer on Monday morning. At 0130 she woke with "pins and needles" all over her, including her head. She woke me again at 0150 asking for her bed power to be turned off; she sensed the humming from the power supply (this bothered her just after she got the bed; no one ever came from the supplier after I complained; I can't hear the hum myself) and began to stress herself. Then 0157 her tongue tingled, her mouth was dry ; gave her the water bottle. 0203 she had sensations as when she was in the MRI. 0212 nickers off and onto the commode, then needed her feet up on the wooden box step plus a pillow. 0216 wanted her 2am meds; no way; feels cold, feet tremoring. 0219 she didn't want to have a panic attack so I had her use the breathing exerciser; she was only able to raise two of the three balls. 0220 mouth dry again, more water. 0247 she woke me (did I return to sleep??), having panic symptoms, she said there was no one to call for help; I put the radio on for distraction. 0257 didn't feel well.  0311 now feeling hot so I turned off the heating; she wanted her "sick" bowl (but wasn't). 0330 didn't feel well, said the Wild Dog driver won't be allowed to drive us. 0405 thinks of throwing up (didn't). 0415 into the shower after I removed the pan which she had pooped into. After the shower she sat on the loo. 0453 another set of disposable nickers on and returned her to the bedroom for dressing. 0505 breakfast. 0530 163/97 71 and 36.9C.

Our usual Wild Dog driver collected us at 6am. There was no problem getting her into the front seat of the car as she feared, wheeled there in the small wheelchair loaned from Wild Dog, the device she thought was better than ours; by the end of the day she didn't like it. We arrived at West Beer car park #1 a little after 0800; she had kept up a conversation all the way, although I, in the back seat, was unable to hear what she said and I noticed the driver had to lean her head to sometimes catch what my PWP said. In the back seat I was unable to sleep or read my e-book. I left the car to find out from reception where we had to go; and then I discovered that there were no "unisex" disabled toilets, just somebody's inappropriate idea of what such a toilet should be and positioned in both the men's and women's toilets. Fortunately our driver was able to take her into the ladies disabled loo, far too small for a small wheelchair plus an assistant.

The neurological department was in what must have been the basement years ago, now days called Level 1; the toilets there are part of extensive locker rooms, quite appropriate for football teams. After stumbling into what appeared to be the reception area we were quickly taken down a corridor to another room and told to wait. We must have arrived early? A family group of 3 arrived soon after and they seemed to follow in our footsteps. About 9am we were taken back to the reception area then into another room with metal chairs all round the walls; we were taken to the far end, the chairs filled with well over a dozen people, then the neuro, Dr C, who saw my PWP in Dr F's rooms the first time we went to West Beer introduced us to the gathered throng, gave a brief history of her trip with PD, some questions were asked, for some reason I circulated photos of her feet illustrating the differential temperature observations, a few voices muttered "this is not PD" although in reference to her overall presentation, or just her feet (the left was turned) or her inability to stand or walk I do not know. Then we were taken back to the other room which seemed to be a waiting area for two test labs. After wandering in and out a few times a lab technician attached electrodes to her legs from a multi-channel monitoring device. He had her stand, tap her foot and the like and I had to support her. She was somewhat stressed by the end of the process; I was quite pooped. Then two PD clinical nurses ran her though the usual PD works and jerks (perhaps this first occurred before we were presented to the gathered throng?). Then she was given four Sinemet 100/25's, a Motilium and one Deralin and after sufficient time for kick in she was put through the same PD works and jerks. No one intimated whether there were noticeable ON/OFF differences. Dr C. gave me a script for another MRI, this time for her lumbar spine region.

I was surprised to find the afternoon was still early as we left, perhaps 1330; I felt that we had been down there all day. We stopped at MacDonalds at 1400, she was feeling free and released, where she had her normal 2pm meds about 1430. I had decided not to fit her Apo pump until we returned home; no one at the hospital seemed concerned about it (I had brought all the necessaries with us) and I suppose there may have been somewhere to have her lay down for the procedure had I asked, had I not felt befuddled and dippy. She said later that no sudden "wash" came over her after she had the 400mgs of Sinemet at the hospital.

We arrived home around 1630. She decided to take her 6pm meds half an hour early, then both feeling completely shagged-out we went to bed, to be woken from a deep sleep at 1945 by some horrible person calling on the phone and hanging up before I was able to gather my wits and answer the damn thing. No message was left and the calling number was not recorded; don't I just hate that? Anyway, she had a staring glazed look on her face so I thought it best to start the Apo at 2032. Slightly peckish, at 2045 she had the leftover half of a chicken wrap and I found two cooked sausages in the fridge. By 2110 the outside of her left leg was burning, the right tingling, as she went back to bed. She said her left foot weighed a ton. Ten minutes later she was yawning, left leg still burning, then she sat up and the top of her head tingled and when her head felt top heavy I had her lay down again, that feeling disappeared, to return when she sat up. While sitting up 114/73 60; laying down 116/71 57, and the heaviness went away on laying down. Head still heavy, she was sitting up at 2145 eager for her 10pm meds. She did not notice any "flush" or kick-in from the Apo but I had noticed her yawning.

So ended an awful Sunday night followed by a stressful Monday. I realised once we left the West Beer hospital that none of the staff wore name badges and none introduced themselves to us. I picked up a couple of names by over hearing their conversations. Most strange.

Not that Tuesday was better. She woke at 0330 having missed her 2am meds, so did not bother to catch up. Onto the commode with my help (hardly ever without) at 0540 when toes of both feet very sensitive and if touched sent "sparks" up to her knees. On waking both feet had been kicking back and forth. Meds at 0555 then back to bed. She told me that around 3am she saw white drapes diagonally on the bedroom wall, then she thought the drapes blueish, and another set vertical, then she heard a loud bang as the huge curtain (or a blind?) fell down. At 0610 a sock on her right foot eased some of the sensations, also 2 Panamax for a headache over her left eye (?) then a sock on her left foot at 0630 took some of the edge off the tingling. At 0650 I found her upside down in bed, packed with pillows, shoes and socks on, as a way to find relief for her back and legs. Later when I returned from the shower she was in the same position but asleep. The headache had spred across her forehead by 0750.
0950 feels hot and cold, "walking over grave" feeling down her back, feels like laying down, took 10am meds. No respite at Wild Dog for her today.
1015 on her recliner, sleepy, legs up, says she would be uncomfortable in bed, covered her with the soft blanket.
1025 asleep.
No further notes till
1915 on the loo for poo
1935 into bedroom, asking for the chunder bowl (but didn't vomit)
2015 I changed the Apo pump (doing it in the evenings from here on to relieve time pressures in the morning when the Wild Dog Care comes).
2400 woke me, she stressed, to remove the overnight nickers.

Wednesday
0400 woke to find her stressed  on the commode.
0630 woke me to get back into bed.
0750 care arrived.
0800 very shaky
0900 asleep on recliner
1030 help onto/off the loo.
1040 155/92 78
1130 physio N. arrived but thought she looked too tired and unstable for exercises, so just chatted.
.
.
.
2030 replaced Apo pump and overnight nickers on
2100 removed nickers, used commode to put her onto loo for poo, where she needed her shoes on, switched on overhead heating, she was in the nude.
2125 back into bed from loo, overnight nickers back on, plus pyjamas, her trolley with meds etc at bedside.
2150 felt cold, needed the quilt.

Thursday
0600 overnight nickers had leaked, onto commode, then loo but no poo
0710 after I showered she felt need for poo, a little in the commode pot, back to the loo
0745 back to bedroom
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.
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2100 changed Apo pump

Friday

0610 she was still asleep, I have no idea what happened during the night. I videoed her from 0610 to 0620 while she snorted, talked loudly. Since she was beyond meds time i woke her, whereupon both legs began to kick madly. Then onto commode, overnight nickers off, the bed was dry
0700 complained of being too hot asked whether heating was on - it wasn't.
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.
1200 Physio N. arrived and exercised her
1300 ON and very shaky
1400 unable to stand from the kitchen table to reach her recliner. She said her insides were shaking without being visible, her legs and head were very tight
.
.
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Saturday
0350 woke to find her attempting to push herself back up the bed, against the tilt it had been positioned to.
0400 needed to piddle, unable to do it in the overnight nickers while awake. I removed the nickers and onto commode, then back into bed with just a pad between her legs. Then she said she had been awake since 2am when she didn't take meds because she couldn't drink water and not piddle, so took the meds now. I placed a pillow beneath her aching legs.
0710 she woke me. She had lowered the bed rails (I thought she was unable to reach the latch) and used the commode at 0600.
1015 to Wild dog for respite. While down town for some lunch and shopping I asked the chemist for  some sleeping pills for her. He didn't want to give me any but after I described what we had been through this week, he relented, advising only one half of Doxylamine Succinate 25mg, rather than the 1-2 specified on the pack.
1540 I collected her from respite where she had been overly hot all day (they keep the temperature too high) and she still felt that way at home and on the loo, so I opened the front and back doors.
1730 she woke me by CB radio (I was asleep on the lounge) to go to the loo. She needed her cardigan on.
2140 changed Apo pump. I used the ultrasound device on a large painful Apo nodule on her left side.
2150 overnight nickers plus extra pad on
2200 meds
2212 Half a sleeping pill. She didn't want to take it, seems to fear such things.

Sunday

0545 thinks she took a Sinemet 100/25 because she had the idea she had to take something at 6am, she had missed the 2am meds.
0615 She has been talking loudly  in her sleep since then, I was unable to understand all  the words, sounded happy. I woke her.
0625 helped her onto the commode. The bed was dry. Later she thought there was a damp patch, so I put the sheets in the washing machine.
0627 meds, feels cold, wrapped her in the poncho, back into bed.
0635 still cold, cardigan on, raised bottom of bed for comfort.
0705 helped her onto commode, head tingling badly.
1000 meds, head heavy, helped her to bed, noticed that she was stepping rather than her usual shuffle.
1020, 1045, 1120 asleep
1140 she called on the CB
1145 helped her up and onto the loo.

Last Monday one of the PD nurses said that she may take a week to recover from the short meds holiday. I hope no longer than that. I will have her take another half sleeping pill tonight, although she will protest. Yesterday I should not have been driving the car around town; I was zonked. Today I am somewhat better.

Chapter 357 - Fearful Anticipation

She fears tomorrow. No medications from midnight tonight. Last meds at 2200 and I will remove the Apo pump and infusion by 2400. For tomorrow she is to appear at a 9am meeting with neuros at the West Beer Hospital. We are to be collected by a Wild Dog vehicle at 0600. She imagines herself to be immovable by that time; worried that I will be unable to get her into the car and out at the other end, some two and a bit hours later, depending on fog and peak hour traffic. After searching this blog I just told her that she had an overnight drug holiday prior to being tested for Apomorphine (a year ago this week) and I don't remember her being unusually immobile that Tuesday morning in the Hot Air City hospital. Wild Dog have loaned us a small wheelchair for the day because she decided that neither her walker or wheelchair were satisfactory.

Also on her mind has been her feet, especially the left which is twisting inwards more than ever, and she has wondered whether the tingling, burning, twisting, loss of feeling to external contact has been caused by the Apomorphine. To put her at ease I searched back through this blog, finding that toes were curling in February 2006, "can't connect with feet" 2006, "left foot arching" December 2012, "left foot turns inwards" and "feet tingling" March 2013. So the twisting, burning, tingling, loss of sensation yet painful to bumps are progressions not identified to Apo. My blog is poor record keeping perhaps, yet a word search does provide some historical answers.

Last Sunday she woke confused which end of her bed was top and bottom and which buttons controlled their positions. Prior to Wild Dog care person arriving she said both feet were extra painful and tingling. She often says that she cannot tell when her feet are on the floor, there is no sensation. That evening we were both tired and distressed attempting to fit her night time absorbent pants. Next morning she was in a bad way; at first she did not wish to get onto the commode, her left foot was very twisted (dystonic??), no pains in her legs unless she moved, but a pain began on the top of her left foot. After I showered and she had her 0600 meds, still in bed, she wanted me to call for an ambulance because she said she was unable to move. By 0650 the pain in the top of her left foot was intense and both feet were tingling madly. She was somewhat  better when I changed the Apo pump at 0740. Because I had come down with "Man Flu" she did not go to respite at Wild Dog on Tuesday. The Visiting Physio put her through exercises at lunch time on Wednesday and Friday. She was very sore after the first sessions the previous week but she has not commented this week. She attended Wild Dog respite yesterday, Saturday as usual.

I still fear she is having spatial/orientation difficulties with her fabric work, at the moment decorating hand towels, although she says her sluggish hands make mistakes that need to be corrected or complete pulling apart to begin again. Perhaps. She is unable to remember the names of the care ladies from Wild Dog; she says I see their name badges when I open the door to them each morning, but then so does she for 20-30 minutes while they shower and dress her. Some 7 or 8 appear regularly and after several months even I know them by name (well, most often I do).

I have been printing Duodopa references for her and will download some YouTube videos for her to watch. So that she knows what the experts may suggest tomorrow.