Chapter 372 - Exhausted and Frustrated

This last week has been unbearable.

Yesterday, Sunday, I was unable to bring myself to write anything but anyway I was pressed for time, family visited from Big Smoke and we met at the Club for lunch. In the middle of lunch she required to be wheel chaired to the disabled loo; a matter of urgency, especially when we found the room occupied. She ate very little of her lunch. Then our gathering was abruptly concluded by another urgency so I just drove her home.

The previous Sunday, around lunch, she discovered her ability to cross her left leg over her right comfortably, something she has been unable to do for a long time, but right over left is too uncomfortable for her. Since that Sunday I have scribbled 16 pages of notes, boring to both read and write, so I won't. Enough to say she has urgent needs to use the loo, always assuming she needs to poop, but mostly does not, and when she does, mostly just "pebbles", two or three at the most.

She attended respite at Wild dog last Tuesday, calling me before 3PM to collect her because her tremors were too severe. This week respite is closed for the holidays.

A few days ago I found a scaremongering on-line warning of the dangers of Movicol (and its variants) so stopped giving her the twice a day doses.

http://www.gutsense.org/gutsense/the-role-of-miralax-laxative-in-autism-dementia-alzheimer.html

Today I decided perhaps she should take it, two doctors having said it was safe. And to confuse me, at one attempt this morning, she did 3 pebbles, and while our house cleaner was here, a reasonable turd some of which was compacted pebbles. The Bristol Stool Chart, quoted on the site mentioned above, rates this as Type 2 and a serious problem. I also inspected the area in question to notice what I assume to be haemorrhoids, a purplish blister object.

I am becoming more irritable and tired, especially after interrupted sleep on most nights between 3AM and 4AM. Each time she needs to void, poop or piddle, she requires assistance onto either the wheel chair or the commode for transport to her bidet, and of course, assistance on and off the bidet. So we are a physical strain upon each other four times for each void. Many times she begins to panic that she will mess her pants, is yet to happen, and usually does nothing more than piddle, although she is sure "there is something there" and waiting longer may get rid of it, up to sitting on loo or commode for an hour or more fruitlessly.

On Xmas Day she needed help transferring and transport to the loo TEN times between 7:30AM and 9:30PM. Even in the middle of the lunch we attended at our village hall; the second time she decided she wished to leave the lunch and go home. She ate very little.

She is unable to walk, usually having no sense of pressure on her feet as I help her up from seated, and if I attempt to force her to walk, her feet drag, especially the left. If this condition proceeds, I soon will be unable to lift her. Most days she spends with neither skirt nor slacks on because she feels restricted across the waist and raising and lowering them just adds to the chore. I was unable to find the lifting belt today; fortunately the cleaning lady did so for me, We need to practice using it, but she hates the thing because it rides up beneath her boobs as well as pressing on her stomach where the Apomine infusion is. My left shoulder and upper arm and neck twinge each time i transfer her; she says nothing about her own similar problems.

Speaking of Apomine, I have not reduced the dosage from 10ml, although both of us hope to see the end of it.

Each day I demand she use her pedals in passive mode for half an hour.

Anything I have written in this blog during the last two years still happens, left foot turning, burning sensations and tingling in her feet, aches and cramps in leg muscles, loss of feeling in feet, head tingling, biliousness, bowel and bladder urgency, inability to stand upright without grasping hand holds, etc etc all continue in greater or lesser amounts; yet each becomes part of living, like breathing, so why write about it?

Today I made an appointment for her to see our GP, Dr I. tomorrow. I have no idea how he may help but I must discuss our situation with someone.

Chapter 371 - Another Light Blinking Faintly in the Tunnel

This week her bowels became reasonably normal, whatever I may mean by that,  since there were several instances of  robust stains on her incontinence bloomers, even an odd "pebble"; some seen in the toilet bowl after just going for a piddle. Purposeful motions became more normal as the days went by. On Tuesday she went to Wild Dog Respite late; I had wheeled her to the loo on the commode (a "pebble" was left in the pan)  about 9am where she remained until 10am. I left her on her own while I went to the hospital to ask for their X-ray from last week to be sent to our GP. On my return she was sweating  and her legs were trembling badly. I dropped her off at Respite a little after 11am. She rang me on my sodding mobile, but I didn't hear the ring, wishing to be collected at 3pm; instead I collected her a little before 4pm, home to sit on the loo until 5pm after passing good motions.

Wednesday must have been a reasonable day; I only made two notes, poo at 7am and 9:30am.

On Thursday Wild Dog provided a driver to take us to her appointment with neurologist Dr M. He noted that GP Dr I had prescribed Lexapro 10mg for Irritable Bowel Syndrome, made no comment after I said it was an anti-depressant often prescribed for Parkies. When I asked his opinion of the "psychogenic movement disorder"  mentioned by Dr F. as the opinion of a number of worthies at the 0900 Movement Disorder meeting at West Beer last September, he explained that that was a comment coming out of a team's discussions, which I assume he meant as the sort of comment arising from the discussions of a trouble shooting group floating ideas. He then went on to say that in his experience Parkies in the four countries where he has worked all experience much the same symptoms but I'm unsure whether he referred to psychogenic symptoms or not. I was tempted to mention the number of neuros who have described her symptoms as "strange" or "unusual" but thought it better not to be grasping at straws, and then, perhaps such comments were simply sympathetic patient directed ones at the time. I raised the issue of reducing her Apomine dose from the current 12ml; Dr M. was quite agreeable, but did not offer any precautions to be taken. Perhaps he thinks we are capable of acting responsibly. I mentioned that apart from some stressful hours after midnight on the day she had to terminate all her medications for that Monday assessment last September, she had been off Apomine for 20 hours without noticeable problems. After some tapping on her legs he suggested she see him next March. On the way home we stopped at MacDonald's, I had to take her steak wrap (a new product) back for additional mayonnaise (which is called Aioli) because she had difficulty swallowing.

That night, Thursday, I did not reduce her Apomine because I wished to set up a video camera to take short clips of her seated on her recliner at odd times during each day as a "before and after" record as the Apomine is reduced; particularly around 11am when she says is her best period of the day. So on Friday I had her do some of the exercises physio has her complete each Wednesday and Friday. Fortunately I had not reduced the Apomine otherwise dry mouth symptoms around 0500 when she needed to spit into a tissue and drink lemonade to relieve a clogged mouth and throat would have worried me. Then that same night I took photos of non-itchy, non-welted, non-heated bright red spots circling her right ankle; she was unaware of them. Although reduced, many of those spots remain as I write this on Sunday.

Yesterday, Saturday, being another respite day there was little opportunity to video her. I dropped her off at 11am and collected her at 3:30pm. The following notes are as I wrote them at 1530:
- all toes tingling as if gone to sleep
- right leg feels OK
- left leg feels dead
- her touching lower left leg feels strange
- no sense of pressure on left foot when on floor
- can't feel my hand rubbing her lower left leg
- can feel my hand rubbing her lower right leg
- taking off left shoe makes arch of foot tingle and has released a bandage sensation around foot, normal feeling is returning
- some red spots still around her right ankle
Then between 1900 and 2130 she slept on her recliner, having woken briefly at 1930 and 2030. At 2130 she rose from the recliner, pushed her trolley to the loo, lowered then raised her slacks and pants at the loo without asking for assistance, walked unaided from the bedroom to her chest of drawers to get a nightie, then while seated on her bed she replaced her incontinence bloomers with clean ones without requiring assistance. For quite some time we have performed a procedure while she is seated on the loo of me lifting her feet, most often only the left, into the leg holes of her bloomers, then she stood in a stooped position holding the fireman's pole while I struggled to pull up her bloomers, most often she needed to sit back on the loo once or twice before I was finished, then assisting her back to the bedroom, and helping her get into bed. Often the commode was needed as transport between loo and bed. At 2140 she said there was feeling in her feet, they were tight but no tingling. Then after I changed over the pump and syringe (10ml Apomine plus 10ml saline) she quickly inserted the pump in the elastic bet (she is using it again) and closed the half dozen press studs on quickly without me needing, in irritation, to assist.

So this morning I awoke at 0700, having slept right though the night undisturbed, even though she told me she rose twice to piddle in the commode and the pan showed evidence of this (if at all possible, she prefers not to void into. Both her feet were tight and on moving her toes they tingled. The outer side of her left calf feels "smooth and funny, a funny sort of numb" (she says). She woke with a dull headache above and behind her right eye. Some red rash remains around her right ankle. She stated that yesterday morning and this morning her feet were un-swollen and neither foot was turned inwards; that developed later in the day. And similarly, she has been able to feel her left foot on the ground both mornings but not later in the day. At 1110 I recorded her doing sit-stands and some leg exercises.

These last few days I am sleeping better, more soundly and with fewer disturbances, My Lumosity scores are rising rather than falling; she has less pain, has greater mobility, calls less frequently for assistance. What is the cause of what may well be a short-lived turn around? Bowels working better after enemas and a maintenance dose of Movicol twice a day, commencement of Lexapro once a day (Dr I. said no rapid changes on such a low dose), reduction of Apomine from 12ml to 10ml per day two nights ago? Or some other change that I don't see?

There are suggestions in the literature I have read that "psychogenic features" is a negative term that suggests to patients that "it's all in the mind", that the patient is a malingerer and the like. Of my PWP I read "her tremor study did show some psychogenic features", so why does someone not offer to treat these as a small contribution towards improving her quality of life, rather than just directing her toward surgical procedures? Which are more severe, the psychogenic features or the dopamine deficient features? Can someone quantify these so we can make some sort of rational decision? We have appointments in 2015 in February for a "sales pitch" about Duodopa, followed by two neuro appointments and one for a spinal specialist in March. And possibly a 10 day stay in hospital should she decide to proceed with Duodopa. We need some project management to provide order to this chaos, appointments 3 months apart are hardly appropriate in the circumstances of an aging PWP with a chronic deteriorating condition aggravated by medications with poorly understood side effects.
All this came home to me some months ago when saw a urologist about a permanently inserted catheter through her lower abdomen; as I attempted to discuss with him why such a procedure had been suggested by others, he bluntly said "I don't do incontinence; if you want this procedure then I'll do it"; so says a highly skilled, highly paid technician. I'm sure he is capable of a perfect job. Recently when I discussed with another specialist the colonoscopy I was about to undergo a similar comment was made by the man that he was not a technician, although I failed to understand the comment within the context of the advice he gave me.

I may have retired 15 years ago from a position as a sort of computer systems engineer ("sort of" because many would say I was not fully qualified) but being thought of as an excellent technician bothered me not at all. In my book, neurologists, although having an enormous knowledge of the human brain and its many sensors, have only a technician's ability of trying a little of this, or that, and if the results indicate, a little more may be better. Although giant strides have been made just in the time since my PWP was first diagnosed, neurologists remain unable to describe the operation of that hard wired (yet with the in-built ability to sometimes correct that wiring) computer which lacks stored memory control, that I call my brain. As for my "mind", or my PWP's, I suspect that it is a figment simply to fill a conceptual hole, something like the old concept of the "ether" though which light and radio waves travelled, simply because to conceive that such phenomena occur in a vacuum was impossible. Thus to me "psychogenic" implies some mis-wiring, which may respond to plasticity exercises. Meanwhile, since there are obvious deficiencies in dopamine, part of the signal propagation mechanics in the wiring, levadopa ingestion must continue.

It's all in your mind they say, that's quite OK, that's where my reality (or hers) is, somehow projected across the 100 billion or so neurons and their nigh on infinity of inter-connections. I can only wonder where their minds are.

To more practical issues. At this time she runs rampant sorting out clothes, placing much into bags for disposal, banging cupboard doors and the like, causing me to jump and check in case she has fallen. At week's end I will further reduce her Apomine, by how much will be decided later.

Chapter 370 - A Crap of a Week

I don't think she has had a reasonable bowel motion for several weeks; always saying that she feels like going but nothing comes. A result of her recent dose of antibiotics?

About 0839 last Monday she became dizzy and faint, her BP on her wrist device was 93/63 65, on my brand new cuff model 74/50 64, so I wheel chaired her to bed, raised the foot end of the bed then pressed the emergency button and asked for an ambulance, which took about 10 minutes to arrive. Her BP had risen when the Ambo's measured it and an ECG showed normal. She did not wish to be taken to the hospital and signed on their laptop accordingly. I took her to the GP for a 1530 appointment. I really can't remember what transpired at that appointment, although he did say the extra urine sample I submitted for her was clear..

Between 0200 and 2200 on Tuesday I had to assist her onto the loo 23 times, mostly for piddle and occasionally for poop but very little of it. Her BP was around 180/90 all day. She did not attend respite.

On Wednesday her BP was again low, 106/51 52  while feeling sleepy lying on the bed at 0715 and similar readings were recorded during the remainder of the day. She had difficulty eating breakfast of toast so I gave her some feta cheese on soft bread and later some prunes. She had a slight headache above her eyes most of the day. Several times she attempted a bowel motion without doing anything more than a few "pebbles" as she calls them. I photographed her efforts in the toilet bowl for Monday Tuesday and Wednesday to show medical people.When physio called she thought she looked rather pale. She had the sensation that "poo was just sitting there" but would not come out. Her stomach felt bloated and full. I made an appointment for her to see the GP, Dr I, on Friday because we wanted to attend our Parky group Xmas lunch on Thursday.

We didn't get to that Xmas lunch.From 0400 she was verging on a panic attack; dry mouth, breathing fast, feeling sick, stomach churning, leg pains, excessive tremor, BP 171/98 73. I had her use the 3 ball breathing exerciser then breathe at a 4-6 rate that someone mentioned. She was feeling hot without bedclothes on and wall the fan was operating. Then her toes cramped. I vibrated Tiger Balm on her legs to ease the pain. Following her 6AM meds I assisted her onto the loo, where she asked for warm water to ease her stomach; a few pebbles. I decided to shower and dress her prior to the arrival of the Wild Dog care lady arrived at 8Am so that I could take her to hospital as soon as possible. A triage nurse attended to her by 0830, and about an hour later a Fleet enema was administered followed by an Xray. The doctor in attendance recommended more enemas and an increase in Movicol, up to 8 per day for 3 days once back home. At home I requested advice from District Nursing  about using an enema, so the nurse came to our place at 1630 by which time the chemist had delivered the only two Fleet enemas they had in stock. The nurse administered one enema, a seemingly simple job. After having her remain on the bed for about an hour as advised I then discovered the more difficult, messy side of the job. I wheeled her from the bed to the loo on the wheel chair which required some cleaning afterwards. She also missed a Xmas afternoon tea at Wild Dog.

Next morning, Friday, I administered another enema after which I needed to strip the bed sheets (even though a small Kylie sheet had been placed beneath her) to the washing machine and hosed down the commode beneath the shower. Obviously the follow up to the enema is the tricky part. Although I had measured her BP low at 104/56 58 when we left for the doctors appointment  he measured it was around 135/80. He advised against further enemas and to maintain the Macrogol (Movicol) at 2 per day, then he prescribed Lexapro 10mg  for "irritable bowel" syndrome. I don't know about the irritable bit but perhaps this will reduce her minor panic attacks; I see Lexapro under other names is frequently prescribed for depression etc for Parkies. He also requested another Xray of her stomach and that was done at 1500 the same day.

Yesterday, Saturday, she remained home from respite, she had some successful bowel motions, somewhat urgently, so wished to stay close to her favourite bidet. I bought two large washable kylie sheets for $60 each; sufficiently large to improve the outcome of my next enema job.

Today we were to attend a Xmas lunch in our local hall. Again she wished to remain home so the meal (which we paid for) was delivered to us by some kind people. Our non-attendance there caused some friends to pop in afterwards to see how she was. I needed to retrieve her off the loo. She also rang back two numbers which had left messages.

To place all the above in perspective, keep in mind that 90 % of the time she needs assistance to go to and from the loo; her underclothes need removal and replacement. Her bra often needs to be undone or removed.Her legs frequently ache and burn and tingle, usually requiring pillows or stools beneath her feet. Her feet turn inwards making shoes uncomfortable yet she is unable to stand or shuffle forwards without them on her feet. Her bottle of water frequently needs filling; even so, she needs to drink more. And other trivialities. Day and night.

Tomorrow I must collect the stomach Xray from the hospital for the GP Dr I. to compare before and after shots around the enemas. I also promised to report to the District Nurse on Friday, but I forgot.

Shit happens, but in her case not well enough.

Chapter 369 - It's All Too Hard

A PD nurse from West Beer rang middle of the week to arrange an information interview about Duodopa in February next year. At 4AM this morning I rose for the loo and on the way back to bed I realised I had agreed to a date that clashed with the date for our local PD group, the meeting for which I had arranged a local psychologist to speak. In an attempt to relieve my stress about my need to remove the scheduling conflict I listened to my radio, a bad thing to do, because the discussions (serious, not mindless talk-back radio) became tangled into my dreaming so I woke a little before 7AM quite befuddled by a programme about the religious implications of a 1960's jazz composer's works, noise I think appalling. I now feel like what he possibly did when he died of liver damage.

I saw our GP about my faint-headedness and blood pressure matters. He thinks the combination of tablets I take may actually be reducing my BP too much, so asked me to change from Caduet back to Lipitor. I also on-line ordered a new BP monitor because my old one tended to disagree with her wrist model which professionals say is inaccurate anyway. So now I have an expensive model which even downloads stored readings onto my laptop (a selling point for someone like me ;-)

Early in the week she complained that her bidet was malfunctioning. On dis-assembly I found signs of water on the power supply module. After a considerable time and several partial re-assemblies, I discovered the water came from a fine spray coming from a hair-line crack in the heated water tank, only evident once all cabling and water hoses were connected and water pressure applied. I made an executive decision that a new bidet (expensive), rather than buying a replacement tank requiring disturbance of water seals, was the speediest and most reliable repair path. So for three days she needed to use conventional methods for cleanliness after a poop, very difficult for her. The new bidet arrived Friday morning, I tested it, then required a warm body to really make sure it was operational. When the bidet failed to work I almost panicked until I realised we had a general power failure. Shit happens.

After some initial success with the Macrogol which she began on November 9th, her bowel motions again became a bother to her, the feelings of incomplete voiding. The GP Dr I. suggested (when I saw him) to increase the dosage to two, or even three sachets, per day, so I am giving her two each day, at breakfast and at the evening meal, beginning on December 4th.

Friday was a bad day for her. She lacked feeling in her feet, felt bloated, did not eat all of her meals, was uncomfortable sitting on her recliner, frequently needed the wheel chair to get to the loo. I took notes throughout the day, a practice that has lapsed because doing so depresses me and irritates her. Between midnight to midnight Friday she needed to be on the toilet or commode 11 times for a piddling and 5 times for a pooping; each event required my assistance except one when the physio assisted her. In anybody's book, this is excessive.

Last Tuesday I took a urine sample (collected at 6:30AM in the bedpan the GP suggested I buy for such purpose, although she sat on the commode while I held the bedpan beneath, since squatting on floor or bed is impractical) to the pathology nurse to check whether the antibiotics were successful with the last UTI. No results forthcoming yet.

Early in the week I panicked when I ordered the kit of Apomine accessories; infusion needles, syringes and saline ampoules, and saw that the supplier was out of stock. We had enough infusion needles to last until tonight, Sunday. I rang the distributor to be told that the kit would be in stock on Friday, which means we will not receive the order until at least tomorrow, Monday. So I ordered 2 packets of infusion needles, available separately without the other items, and they arrived on Friday. Which was fortunate because at 2:48AM Saturday morning she woke me to say that the pump was beeping, displaying the error message "OCCL" which means that the infusion needle was blocked. Restarting the pump did not clear the error and the tubing to the infusion needle was not kinked and there was no blood in the tubing. So I attached a new infusion needle to the pump and after waiting a couple of minutes for the Apomine to be pumped slowly down the tube, rather than priming it, I fitted the new needle to her and removed the old one. I calculated that she was not receiving any Apomine for about 40 minutes, so the beeping had not awakened her immediately.

Crap of a week.