Chapter 411 - An Average Week Perhaps

My first real "Day Off" last Monday, a train trip to Big Smoke for a 60 year reunion with the surviving blokes I began work with, when we were just kids. Lunch on a harbour cruise, although I had to leave about 2PM to catch the return train, slightly delayed home because of a break-down requiring us to move to other carriages. She was attended to as usual with showering and dressing then about 10Am was taken around to the Respite Club, returning home after 4PM with a minder until I returned a little before 8PM. Her day was OK, although they had troubles getting her in and out of cars. Her day was funded by the budget provided to me by a government Caring group.

Thursday I took her to the Clinic Nurse at the doctor's for the first B12 injection prescribed by our GP after the results of her recent blood test. The Clinic Nurse gave us a couple of hydrolysed type "ice blocks" to sample because of her continual sweating. I'll try to buy some at the chemist's today. Then off to the podiatrist's for her routine toe job.

Friday two ladies from Wild Dog visited to sign her up to a Level 4 package. At this time we will only have them come each evening to help put her to bed, which will be earlier than we prefer, perhaps around 8PM plus routine visits from a nurse (which is prescribed by the regulations). This will be a strange experience for both of us, yet I presume we will grow accustomed to the routine. We have begun going to bed earlier, about 2030, to get into the routine. Unfortunately, while we continue to behave ourselves by taking the Duodopa pump off, I need to be awake around 10PM. Three weeks to go before we get a ruling on 24/7 operation of the pump.

The annual budget allowed for Level 4 care is almost $52,000. Her Duodopa medication is about $11,000 a month. I feel somewhat guilty that we are such a burden on the system, yet I presume the total is much less than both of us ending up in a nursing home sooner rather than later.

Chapter 410 - Quality of Life

I am not in a mood to write anything tonight; or any day previously. I'm so tired, at times light headed, sometimes wobble when I walk. Most mornings after breakfast my blood pressure drops below 120/80. Our doctor gave me a check-up; standing in his room, eyes closed I maintained my balance; walking heel-to-toe was OK, my BP was OK; he gave me the last of the B12 injections begun some time last year and gave me a script for a blood test in a month's time.

On another day I took her to see the doctor to have him check her for melanomas; nothing found, although he paid particular attention to a few spots on her shoulders.

A call from a physio at the local hospital to bring her in for her left foot to be investigated with a view to having cast serial AFO's fitted if Botox was injected, seemingly at Big Smoke. We had not been advised that such was to occur. We await their instructions.

The West Beer PD clinic had also asked for a blood test and some days later when he checked her for spots he told us that the only test a little bit off was her B12 and gave us a script for it, and that reminds me, I am yet to have it filled.

When she saw her eye specialist he was pleased with her eye pressures, both were 16. However, she was not blinking enough so he prescribed eye drops 3 times each day. Damn difficult to remember to administer them. I had noticed that her eyes have been red-rimmed lately but thought nothing of it.

She has had two "falls"; on outside on the patio when she inspected something in our raised garden bed and she slipped forward off the wheel chair. Then last Friday she took herself to the loo, falling forwards onto the floor as she left the wheel chair; some "mess" on the floor as a result. Surprisingly, she suffered no bruising or cuts as a result of either.

On Tuesday last week, the day she saw the physio, she made a mess getting onto the loo, resulting in a late afternoon shower.

Most nights I hear her yelling out while asleep. Early one morning she woke me when she jammed her fingers in the bed rail; she had attempted to lower the rails in the dark. I can't remember the reason why.

She now "hums" almost non-stop all day; that tuneless grunting noise. I just ignore it. She has begun punding again, sorting things when she opens a drawer or a cupboard. She cannot be distracted from her hand sewing (her sewing machine needed more repairs) of small decorative hand towels and I lose my temper when she persists with a task in hand, humming away, as I attempt to have her get ready for an appointment. My foible in wishing to be early for appointments, or just simply to "get going", is becoming stronger than ever, and with my continuing tiredness makes me very irritable.

Each morning I wake at 0600, load a cassette and connect the pump to her without her waking, so by 0700 when I rise she is reasonably mobile, complains of lower back pain, and with difficulty gets onto the commode. So much for neuros thinking she can do all this on her own from sometime after 0500.

There have been different feelings, sensations, in her feet not experienced before. Yesterday spots on her feet were pulsating, other times there have been pains. Signs that her spinal operation has begun re-connecting some nerve signals?

We continue to make Sunday mornings our shopping day, although I'm finding pushing her around in the wheel chair a very tiring experience. I would not do it except that we both need to get out even if it's just a matter of browsing the same shops. I just remembered that I put some scripts into the chemist and forgot all about going back to collect them. I'm losing it!!

Round about now, 2120, I begin to organise us for bed; pump off, glaucoma eyedrops, Movicol when I forget to give it to her earlier, a Sinemet CR, wrap her up in incontinence wrap arounds and it's usually about 2300 when I turn the lights out, for I need to read a few pages first, and then when I wake in the middle of the night I need to listen to ABC RN on an ear bud to prevent my mind endlessly spinning circular thoughts.

What a shit of a life we have.

Chapter 409 - Just so Damned Difficult

To West Beer PD Clinic on Wednesday, up early, leave home early at 0730, arrive at the hospital at 0945 with 15 minutes to spare to arrive at the clinic waiting room 1/2 hour before appointment time as requested. Our Wild Dog driver, unable to find a parking slot in the labyrinth of mottley car parks decided to drop us off at the drop-off point (which has a 100mm high curb over which the wheel chair had to be lifted) at the front entrance. The driver gave up searching for a parking slot, ending up down at the big park in the adjacent suburb before going to another suburb for a coffee. Meanwhile, we darted to the disabled loo in the expectant mothers clinic near the front door, pushed the wheel chair to the anal end of the main hospital complex, down 1 floor and was in the clinic waiting room 10 minutes late. I am unsure what I would have done had I driven our car; we would not have made the appointment. The comment when I raised the issue later was "Have you tried staying at the Lodge?", the two single bed rooms with disabled loo at end of the corridor I stayed in while she was fitted with Duodopa some 8 months ago. Of course that means coming up to West Beer late on the afternoon before the appointment (timing our arrival for empty car park slots close to the Lodge), staying overnight, attending the appointment then driving home again. We may have to do that when my funding for "respite" runs out. Respite these trips are not, a stressful day, resultant headaches and irritations. When I asked about clinics at Hot Air City I was told there were none and the Nurse Consultant we used to find so helpful has taken a new position elsewhere.

The clinic began with an interview by a junior neuro unseen before, querying her medical history from 24 years ago, seemingly to confirm what is already on file, the usual Parky tests, before her left ankle was examined and seeing that she was unable to stand, let alone walk. Dr F. then entered, checked the ankle, deciding there was movement in it that may respond to treatment (AFO?) and Botox. He said he had not noticed the severity of the left drop foot matter when she last saw him in his rooms, on the occasion when he asked a technician on the spot to do an impromptu nerve conduction study. He asked me to ring his rooms to schedule another nerve conduction study at her next appointment late in March. Then the Nurse Consultant changed the fittings on the PEG tube, a routine procedure. They were not happy that I had changed the Duodopa pump to 24/7 operation, there were possible negative consequences, which I can't remember for I overlooked taking notes, what with being stressed, slightly fuzzy headed and out of sorts. Although I had sent an email saying what pump settings we were using, the Clinic Nurse assumed wrongly I ran a cassette for >16 hours, assumed I had obtained a script for larger quantities of Duodopa, told me there was no need to flush the inner PEG tube once a week when running 24/7 and I should flush the outer tube daily because stomach material has been found to clog it (nobody advised me about that). I said we will return to approximately 0600 to 2200 pump cycle, taking a Sinemet CR at 2200 and beginning each bright sun shiny day with a 14ml "morning dose". My dearest Parky patient partner led them to believe that she is always awake from 0500, laying there quietly waiting for me to wake, so she can administer connecting & starting the pump each morning. I made no comment, not wishing to contradict her to start a domestic. we came away with a script for blood tests.

Tonight, Sunday, she returns to the old regime form 2200. For the last few mornings I have videoed her struggling to get herself onto the commode at the side of her bed, the only baseline reference I can think of to compare with what happens from tomorrow morning. I must now research the issues about running Duodopa 24/7, which I briefly looked for some months ago. Anyway, we will comply, running the old regime, unless her quality of life is worsened, until we see Dr F in his rooms in late March.

The next day to Hot Air City for an MRI scan at 0910, brought forward because Dr M, neurosurgeon, was away on on the planned appointment on the 12th of this month. Advised of this some time ago, I forgot to reschedule the MRI to an earlier date. Fortunately, the pathology place was able to do the scan earlier on the same day. Dr M seemed disappointed that his handiwork in her spine has not had the hoped for effects and that scar tissue remains pressing on the nerve fibres at L5. He hopes time will reduce the impact of the scar tissue.

In between the MRI scan and the appointment with Dr M (the two are located some 50 metres apart) we enjoyed breakfast/morning tea/lunch sitting in dappled shade in a garden area. Too late we realised that we had been mildly sunburnt. Only later did I realise that some years ago she was extremely sensitive to sunlight, her exposed skin becoming unbearably itch within 20 minutes. On this occasion that did not happen!! Perhaps the sun sensitivity was the result of the witch's brew of Parky meds she was taking at that time.

Then on Friday we saw our Big Smoke friends at the Highlands club for lunch, leaving there about 1700 after long rambling chats.

Yesterday she was at respite at Wild Dog.

Today, Sunday, although I really did not feel fit enough, I decided I must take her shopping. We bought 3 cheap bath towels to cut up to make "gloves" for the seat paddles on the Sara Stedy to protect against the brown stains sometimes found on them. At home I pestered her to begin making them, until I realised she was intent on covering cut edges of the towels with bias binding which had the possibility of becoming a large project never completed, so I intervened, cutting the fabric roughly to size for her to stitch a side and an end to form a pouch, much larger than needed yet easily slipped on and off the paddles. The shoe shop where we have been buying her expensive (for us) slip ons had a special of "buy two pairs and the 3rd for $1" so I succumbed for her to have good shoes for at least a year.

Chapter 408 - Little to Say

I am attempting to institute Sundays as our shopping day when we do a minimal amount of shopping, have a coffee and bump into a few acquaintances who are usually care ladies from Wild Dog; an illusion that we know a lot of people. But a few hours out in public for her. We are buying few grocery items lately now that I often share my frozen diet meals with her, so there is little difficulty pushing her in the wheelchair while filling a shopping basket (held on her knees) rather than a trolley. Except yesterday when the chemist told me the Duodopa order had arrived - 56 cassettes in 8 boxes are quite bulky. These days I feel very tired with my blood pressure starting the day about 117/75 or so; makes me feel light and fuzzy headed and yesterday after walking about for a couple of hours I really felt the need to be at home. I slept on my bed for some 3 hours during the afternoon, then went to bed early as well. Lately we may not be settled into bed before 11PM and then begin to wake around 6AM. I need to begin her "going to bed" chores much earlier than 10PM.

A message from physio KW via her receptionist that there was no suitable AFO for her right leg puzzled me but a physio at West Beer Hospital had been contacted (KW is overseas at this time). A response to my email to the West Beer PD Clinic said there was no physio in their clinic and no one contacted them about her drop foot condition. In my email I had mentioned that her pump runs 24/7 at 4.8 mL/hr; the reply said they do not recommend grater than 2.1 mL/hr over night. We will hear what they have to say when she attends a clinic there next Wednesday. Which may be her last at West Beer, for I doubt that I will be funded for transport once my budget ceases at the end of the financial year; my current light headedness is far from compatible with at least a 2 hour drive each way and pushing a wheel chair along hospital corridors. We may return to Hot Air City for clinics but I'm unsure about neurologists down there.

I recently bought 2 books by Norman Doidge and each evening on going to bed I read to her a page or two from a chapter entitled "A Man Walks Off His Parkinsonian Symptoms" from the book "The Brain's Way of Healing" in which is described the method one man devised to reduce his PD mobility symptoms. The technique is consciously intensive and I doubt she could accomplish the technique even if she was still able to walk; even so, she is frequently attempting to move her feet and toes. As could be expected, a number of professionals disputed the claims of the man Pepper written about in the book, publicly stating that he never had idiopathic PD, only atypical Parkinsonian symptoms and therefore the man mislead suffering and genuine PD patients whose symptoms may only be relieved by medications. I think we have met a couple of professional gentlemen who would think that way, those that said, or implied, "You have PD, just learn to live with it!", the type in centuries past who practised blood letting.

Except in the last week she has exhibited little punding and obsessive pursuits. She very rarely "hums" tunelessly. Although yesterday she pulled her bed apart, attempting to shape it with pillows at both ends, spending half an hour or more attempting to implement some plan she had in mind yet unable to do so. Part of the re-arrangement involved a foam foot buffer so that her toes did not bump painfully against the end of the bed; I can only assume that need has gone now. Then going to bed last night she sat puzzled by the arrangements of pillows etc so I returned it to roughly normal. Her main activity lately is making small bags covered in ribbon, the function of these escapes me.

She has largely overcome her fear of being seated on the Sara Stedy, although at night she begins to tremor at the site of it, yet not in the mornings.

Our son and family visited us at the Club for lunch on Saturday.