Chapter 507 - Patronised

Last Wednesday up early to set her pump for daytime dose rate at 0535 so that she is somewhat mobile when I transfer her out of bed onto the commode a little before 0700 then to give her breakfast because I had been told a Carer was scheduled to give her a shower at that time. Fortunately I gave her breakfast early because the Carer did not arrive until 0720, the time the office told the Carer to be here; not really late, just different to what the client had been told. Doubly fortunate when the cautious driver to take us up to West Beer arrived 10 minutes earlier than planned at 0800; because he had not driven us there before. An uneventful trip to have us there at 1020. The waiting area was full, no one at the check-in window, so after a brief closeting in the disabled loo I fronted at the window and when asked for my number I tore one from the roll similar to the type often seen at a deli at a supermarket. "There it is -15" I said. So I was asked to sit down. Well there was nowhere to sit. Then #14 was called. So the lack of clients at the window must have been due to the overwhelming paperwork load for the receptionist. Sometime later my number was called then I returned to holding up the wall; she was OK in her wheel chair. Her name was called for the usual regular replacement of the PEGJ attachment on her stoma tube. Then out to the waiting room again. After awhile the crowd thinned so I was able to take a seat. Her pump began to sound High Pressure alarms which I diagnosed as being due to the replaced fitting rather than kinks in the hose, so I asked to see the Clinic Nurse. While I was absent an interfering carer for another Parkie Patient had begun to poke and prod at the tubing. The Clinic Nurse came, looked at the pump and fitting and all that I saw her do was unscrew the coupling (which I hadn't done) later when I asked I was told that nothing had been done; really put me at my ease seeing that we had a 2 1/2 drive at least to get home to a country town. At 1241 I rang the driver to advise him we were running late. Sometime later we were ushered into a consultation cubicle.

A junior neuro was there to go through the basics. He knew nothing of the Symmetrel trial and its results; there seemed nothing about it on his data base. I attempted to fill him in on the details by waving my finger at pages of FitBit charts. He seemed disinterested. He ran her through an abbreviated foot tapping routine, asked whether a nerve conduction study was done at the last visit to Dr F. "No, that was in the previous visit". An obvious need for MyHealth (is that what the government calls it these days?) sharing of data. I asked whether Dr F. was here. The answer was "He's around." A senior neuro came in (you can tell by the grey suit worn as a uniform). He seemed to think we had met before, perhaps we had. I began to tell him about the Symmetrel trial and he responded as if he knew about it. I waved FitBit charts, pointing out that her daily dyskinesia patterns had changed somewhat after she had stopped taking Symmetrel. The man gave the impression that could be only for a short time afterwards. I mentioned the word Symmetrel ER, and the man responded "Rubbish! Forget about that." to which I commented that my reading suggested the ER form was designed for this situation, waving my hand toward a pair of dyskinetic legs. Someone asked what the reaction to a bolus dose was; I said "None". It was decided that the bolus setting be increased from 2.0 to 3.0, a male clinic nurse was summoned to make the change to the pump. I was asked whether I was able to make further changes, I said "Yes, I have the manual". I mentioned the time she was given Botox injections in her left leg when Dr F. asked for 2 bolus doses be given 20 minutes apart and as far as I could tell the extra dosing had nil effect on the dyskinesia. The reply was reference to dystonia and the tremble she was then exhibiting in her chin (in hind sight, I only see one patient who has her own symptoms, the most debilitating being dyskinesias of her legs and signs of other symptoms are not noticed by me and I, her primary carer, have never been "trained"). The man said one Symmetrel a day, or perhaps every second day could be tried. I then, stupidly, referred to a lifetime in the computer business intending to introduce the topic of "trouble shooting". The man interjected that the body was much more complicated than a computer. Instead of telling him trouble shooting techniques were universal and independent of the type of machine under investigation, I replied "The good thing about a computer is that it can be unplugged." He reacted and as he left the room he said something like "You can be put in gaol for saying that!" He must have been thinking in terms of euthanasia. Somewhere in all this I asked the Clinic Nurse whether she does house calls for stoma maintenance; she replied that Abvie (the Pharma that supplies Duodopa may do so). So after a torrid gathering we left the room without a written plan on how to proceed with her meds. I lost my way in the labyrinth of the hospital, found my way back to the waiting area, we made use of the disabled loo once again, found the lifts, out to the front door where I rang the driver at 13:43. An uneventful drive home except after leaving a McDonalds and when my face was in a Big Mac, the driver failed to take the exit from the western to the freeway south so we travelled some 10 kms out of our way. I have since sent an email to ask whether Abvie makes house calls in country towns. I hope so because that will save about $800 out of her Level 4 Package for the day trip to sunny West Beer.