October 9th, 2020 - Casino NSW


Neurologist Visit:


A very successful visit with what we believe will be our new Neurologist.


We strongly suspected that Ann's medications needed adjustments.  This is, after all, a standard part of the treatment for Parkinson's Disease.


The dyskinesia was out of control and the off periods were too frequent and too strong. 


However, we had not been able to travel to Queensland to see our Neurologist there because up untill just last week, the Queensland border was firmly shut due to Covid-19.  Fortunately, Neurology services returned to Lismore, our local major center, just last june after 4 years with no Neurologist in the area. 


And we were able to get an apointmet quickly as they are still building their patient base.


We are fairly certain that if we had been able to get to Queensland, then our Neurologist there would have recognised the out of control dyskinesia - it is fairly obvious - and made the appropriate medications adjustments.


Both of these conditions are not caused by Parkinson's Disease, but by the medications that are taken to ameliorate the effects of the dopamine loss in the brain - which is what causes Parkinson's Disease.


There is a description of both dyskinesia and off periods on the "Medication Issues" tab.


Ann was in a dyskinesia state when we were ushered into the Neurologist after a detailed session with the Parkinson's Nurse.


So, after the usual introductions, the Neurologist comes right out and says to Ann, "You are over-medicated"


So, off to a good start. 


After a fairly long consult, a plan of action was agreed and a follow up appointment made for 4 weeks out with the Parkinson's Nurse contacting us regularly over those 4 weeks to monitor how we are going.


Rex volunteered to take videos of Ann twice a day and that was agreed on, and Ann was asked to keep a detailed dairy of what is actually happening on a daily basis - something that Ann already does, although not quite in the detail the Neurologist wants.


We will also be providing the sleep data from our Polar watches.  Ann has an advanced one that measures Deep Sleep, Light Sleep and REM Sleep as well as the usual data of how long, how many interruptions etc.  Rex has the cast of basic Polar A370 from Ann that just says he was asleep - duh!


We already know our sleep is less than ideal, and this data will assist the Neurologist in her assessment of Ann's ongoing medication regime. 


In the meantime, a reduction from 4 tablets to 3 tablets a day of one particular medication and the total elimination of another as a starting point - like starting tomorrow.  So, the 7:30 am pill taking is now gone.  Ann is delighted, because it means she can go back to sleep after the 7:00 am medication without worrying about waking up again at 7:30 am.


Twice daily videos will record the effects of the medication reduction - we hope - and Ann's detailed diary notes will fill in the gaps. The nurse will call to see how we are going and if needed will consult with the Neurologist on an appropriate course of action.


This reduction will continue untill the appointment in 4 weeks time when the Neurologist will re-assess the situation.


Overall, a very satisfactory outcome, and only a 45 minute drive door to door instead of the usual 2 and half hours door to door to Queensland.


And the Neurologists' initial consult fee of $460 was reasonable as well, with our health system kicking in $235 leaving an out of pocket of only $225. Can't really complain about that.