Update of Ann’s Parkinson's following Neurologist Consultation Wednesday, February 3rd, 2021.
First, some back story or as Lee Falk (1911 – 1999) would say “For those who came in late”
We were traveling along fairly nicely up till 2020 seeing Anns’ Neurologist at John Flynn Private Hospital Medical Center at Tugun on the Gold Coast in Queensland– a 2-hour drive away in another State.
There was no other neurologist closer.
Then the Covid-19 Pandemic caused chaos with travel within Australia and we were unable to see the Neurologist at Tugun at all. The border would shut, re-open, shut again making travel planning impossible.
For those of you living outside Australia, when Queensland shut the border it was a hard shut with road closures manned by police and occasionally members of the Armed Forces providing support. So, serious business.
In the meantime, Anns’ Parkinson's Motor symptoms were worsening. A brief telephone consultation mid-year with the Tugun Neurologist was inconclusive as there was no visual element.
Parkinson's has no cure as yet. Current treatment is aimed at controlling and moderating the Symptoms of Parkinson's via a regime of medication assisted by exercise of some sort.
There are two sets of Symptoms of Parkinson's, Motor and Non-motor.
Motor symptoms are the visible ones that most people are familiar with – think Michael J Fox, Billy Connelly, Cassius Clay and include tremors (shaking) stooped posture, shuffling gait often requiring a walker, rigid un-smiling faces, slurred speech, and so on.
By the time in September 2020 when we occidentally located a new – as in recently arrived – Neurologist in nearby Lismore – 25 minutes away – Anns’ Motor Symptoms were getting a whole lot worse and needed attention. Dyskinesia (uncontrolled swaying dance like movements of the upper body in Anns’ case) was a real issue and impacting on Anns’ quality of life. Significant “Offs” in the afternoon.
An “Off” is when the body sort of shuts down – like all the energy disappears – a switch is suddenly flipped and the body says “Ok that’s enough for now” - all the energy just goes away somewhere else.
In addition, Ann was having to use the U-Step Walker inside the house most of the time. The U-Step is a Parkinson's specific walker
As the Neurologist was new in town, getting an appointment was easy as she was in the process of building a patient base.
So, our first appointment with our new Neurologist was in October 2020.
The almost immediate reaction of the Neurologist when Ann and I walked into her room was “You are over-medicated”
So, of to a flying start.
Medications adjusted; next consultation set for a month out in November to see the results of the medication tweak.
The impact was stunning.
The Dyskinesia stopped overnight, and the use of the walker slowly diminished and the “Offs” diminished as well.
Ann had been using the Apomorphine injections to combat the “Offs” but had stopped as they were on occasion accompanied with nausea (which is a known side effect of Apomorphine). And the injections were tiring as well. How diabetics manage with their injecting regime, is beyond us.!
The second consultation in November resulted in no medication changes. The Neurologist was very pleased with progress in Symptom reduction and set another consultation for three months out in February 2021.
That brings us up to date.
Had a long consultation, around 30 minutes, and Neurologist did the standard physical tests, and then declared she was very pleased with Ann.
This was after failing to negotiate the doorway into the surgery on her portable scooter and causing all sorts of havoc in the waiting room crashing into tables and pot plants all the while trying to get the brain to convince the fingers to let go of the scooter throttle.
And the Neurologist says to Ann “Are you sure you still want to renew your drivers’ license?”.
The neurologist has to sign off on that as Anns’ license is endorsed as requiring an annual sign off by a Neurologist because Ann has Parkinson’s.
Ah well, apart from a bruised ego, not a whole lot of damage, and the look on the Practice Nurses’ face was worth it!
From Ann – an introduction to the consultation yesterday
A lot of things can happen when you see your neurologist— if you have a meds issue, you might come away with a meds change BigTime or a meds ”tweak” small time with Big Time possibilities,
Or, if you are having more trouble with moving about or standing up for the time it takes to do stuff, you might get the chance to show that you can touch your finger to your nose or to feel woefully inadequate when you veer a bit to the left or to the right.
And voila, you have demonstrated to your neurologist what is happening with you.
And it is on the cards that your neurologist, responding from a bank of knowledge and experience, will come up with a thought about it all you had not even considered.
In each instance, you will have had proper take always which will help ‘back home’ when you are dealing with the day to minute P Word situation you face each 24/7.
A good outcome can go a long way.
Obviously, I didn’t veer to the left or the right of my nose, and I got the meds “tweak” that we wanted. I suspect that the tweak will finish out a 5 months meds change event which saw me come back from being over-medicated with dyskinesias to being dyskinesia free.
And if not graceful, at least veering a bit more toward Steady Eddie on a good day and very importantly also now in good shape for the improvements which physio, the gym & hydro (aqua aerobics) give when I keep them up regularly.
Now for Rex with some details and for the record I did not veer left or right of the practice doorway into the waiting rooms. Just scraped the front basket on the door frame and terrorised the practice nurse.
Rex just loves a good story.
Well, there was no change to the type of medication nor the amount – but we did tweak the when.
So, a new medication dosage timetable to address some “Off” issues and some tremor issues.
Next appointment in 6 months’ time.
Neurologist very happy with Anns’ progress – which in Parkinson's speak actually means lack of progress. Ie. The Symptoms have not increased and are being either reversed - as in Anns’ case - or being held at bay via the use of medication and the engaging in exercise.