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.