We had our Covid-19 delayed Neurologist consultation this morning. Last one was back in February 2021. Our consultation this morning was with two people - the Practice Nurse and the Neurologist.
We had 45 minutes with the Practice Nurse and then we had 50 minutes with the Neurologist herself.
In all, we were in contact with the Neurologist and her staff for 95 minutes - and being first cab off the rank with a 9:00 am appointment - no waiting.
All for only $360 with $119 coming back from Medicare (Our Federal Government Health Scheme) so out of pocket only $241 - fairly reasonable we believe for the length of face to face consult time.
The Practice Nurse
The Practice Nurse collected some base data and then spent nearly 30 minutes conducting a variety of tests of Ann's cognitive abilities. By far the most comprehensive cognitive testing Ann has done since being diagnosed with Parkinson's in 2012.
Cognitive issues are the Parkinson's Symptoms that you do not see, but include the ones most detrimental to Quality of Life for PWPD (People With Parkinson's Disease).
The Neurologist
We had taken a printed list of concerns and issues we wished to discuss with the Neurologist.
The major issues and concerns were:
Left Hand Tremor
Lower Energy Levels
Constipation
Saliva control
There was a significant amount of probing questions and discussions around these points.
She also conducted the usual flexibility, balance and walking tests.
We played two videos taken a year apart, August 2020 and August 2021 of three different situations for Ann - walking outside with a cane, walking down a hallway in our house and turning around and moving several times in our kitchen (as you would in meal preparation activities).
In general the Neurologist was pleased with the flexibility and balance issues and the lack of any significant deterioration as shown by the videos.
It was agreed that I would continue to take these videos to record the three activities of walking outside, negotiating a hallway and moving in a kitchen.
In terms of our stated concerns and issues, the Neurologist's reactions were:
Left Hand Tremor
Not too concerned with the Left Hand Tremor - i.e. it is not severe at this time. But commented that Ann had Dystonia in the hands. No recommended action at this time.
Lower Energy Levels
She was fairly concerned about Lower Energy Levels and the Restless Leg Syndrome (RLS), which was not on our discussion list, but came out in her probing and gnawing on comments during the discussion. Our Neurologist is a relentless gnawer when she latches onto something that she sees as being important in PD (Parkinson's Disease).
We had been happy with the reduction in night time leg pains, and the resulting disrupted sleep, being achieved with the 400mg Magnesium capsules.
Not so our Neurologist.!
She then discussed Sifrol (Pramipexole dihydrochlor) - a standard drug used in PD (and other areas) for the treatment of RLS.
We mentioned that Ann had been on Sifrol in the past, but a long time ago. (We did not have those notes with us, but located them when we returned home. Ann had been on Sifrol in the period Jan to May 2013.
In the end, she prescribed Sifrol for the Restless Leg Syndrome - starting at the lowest dose and wanting another consult in three months time to monitor progress.
Constipation
For the constipation issue, she made a tweak to how that is being treated by adding back Movicol, a standard stool softener to Ann's regime of Coloxyl with Senna - which is a dual-action laxative containing two active ingredients docusate sodium and sennosides (senna).
The docusate helps soften stools while the senna stimulates bowels to contract, helping to push the stool out.
(We both now know more about poop that we ever wanted to know !!!)
However, constipation is a MAJOR issue with PD and, apart from the normal danger of impacted bowels, it severely inhibits the uptake of Levodopa to the brain - and Levodopa is the so called Gold Standard drug used world wide in the treatment of PD.
So, constipation just has to be managed properly, and for PWPD, it is just a normal part of the process of managing PD.
Saliva and Film
For the Saliva and Film issues, the Neurologist had nothing further to add to the recommended action of the Ear Nose and Throat Specialist we saw on Monday last, August 30th, 2021.
The Next Steps
Ann is to modify her Constipation management by adding back Movicol.
Ann is to start taking low dosage Sifrol
The Neurologist wants to monitor the results of Sifrol, so our next appointment is set for December 20th, 2021 - in just under 4 months from now.
Conclusion
Overall, Ann is delighted with the Neurologist consultation and, added to the excellent consultation she had on Monday with the Ear Nose and Throat Specialist, it has been very good week indeed.
PS From Ann Harriett herself !
Thanks to Michael J Fox’s team, I am well versed in cognitive testing as each quarter in the year, I participate in a MJFF-funded long term study when people living with Parkinson's answer questions about how it is all going. The final bit is always cognitive testing, so I was no stranger this morning to the process Rex mentioned in the main note about our visit to the Neurologist.
Surprise, the same test that gets me every time in the MJFF study did the same this morning.
The Practice Nurse read a sentence and asked me to recall it after a short delay— am sure you get the drift.
Do you think I could remember the sentence which was about going to church in a red dress, seeing a rose somewhere along the way? Not on your Nellie. Guess no worse, no better. At least I knew what day of the week today is and the date— 1st Day of Spring in Australia…… Easy Peasy.
Ann Harriett