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.