November 9th, 2020


Results of Medication Change


The major benefit from the medication change on October 9th, 2020 (reduction in Levodpa and removal of Azilect as indicated on the Medication Changes Tab) has been the reduction in Dyskinesia. 


However, there has been an associated increase in "Off" Times caused by the same medication changes.


The changes in Dyskinesia are ahown in the two videos below. 


The “on-off” phenomenon in Parkinson's disease (PD) refers to a switch between mobility and immobility in levodopa-treated patients, which occurs as an end-of-dose or “wearing off” worsening of motor function or, much less commonly, as sudden and unpredictable motor fluctuations.


This condition can not really be shown via a video clip.  However, Dyskinesia can be easily shown as the two clips below demonstrate.

Neurologist Consultation


November 9th, 2020. Casino, NSW


A successful consultation today with our Neurologist in Lismore. Detailed questioning of how the October 9th medication adjustments went followed by a full physical test of Ann's mobility.  The neurologist was generally pleased with the results of the physicals and paid close attention to Ann's concerns regarding the main Parkinson's medication that Ann takes. 


This is Stalevo, a combination of Levodopa, Carbidopa, and Entacapone (Levodopa 125mg/ Carbidopa 31.25mg/ Entacapone 200mg). This is the only PD drug that makes Ann nauseous. 


The paragraphs that follow are probably only of interest to PWP (People With Parkinson's) because they detail the changes in medication coming from today's consultation.


  • The neurologist had already reduced the Stalevo dosage by one tablet a day and was willing to drop the Stalevo entirely and replace it with Madopar.  Madopar is still Levodopa but combined with Benserazide.  Levodopa is the main PD (Parkinson's Disease) drug used to replace dopamine in the brain and, as such, is a common part of the PD medication regime. The Madopar prescribed by the Neurologist is Madopar 100/25 (Levodopa 100mg/Benserazide 25mg).


  • And of course adjustments in usage have to be gradual and controlled.  Ann is still taking 3 Stalevo a day and this has to be replaced with Madopar at the rate of one of the three Stalevo each week. So on week one, the 11:00 am Stalevo gets replaced, week two the 3:00 pm gets replaced, and so on. So starting at week three, all the Stalevo will be gone and replaced by the Madopar.


  • In addition, we altered the timing of the taking of the medications. Timing and dosage amounts are a fine balancing act with PD.  If you reduce the Levopoda (the dopamine replacement for the brain) because there is too much Levopoda Induced Dyskinesia (LID) you run the risk of having bad "Off" periods. For many PWP, it is a trade-off they are constantly managing.


The other two issues addressed were Constipation and Sleep. 


  • Constipation can be a major issue with PD and the Neurologist believes it really can't be fixed with just dietary measures but needs some intervention - at least more than we were using.  Recommended was the over the counter product, Movicol as opposed to the Actillax Ann was taking. So, no script required for that medication.


  • Sleep patterns were also discussed and the Polar Watch sleep data was examined.  Agreed that Ann should start using a prescription drug called Circadin 2mm to improve her sleep.  


The next appointment is in February 2021, but with a very strong admonition to contact them immediately if anything untoward starts to occur as a result of the medication changes.


Overall we are delighted with the outcome of today's consultation.  

Bladder Botox Injection.


The 7th set of injections to address OAB (Over Active Bladder) - which can be a problem in Parkinson's - happens on November 13th, 2020.


Troublesome incontinence develops in only about 15% of people with Parkinson’s. The most common urinary symptoms experienced by people with Parkinson’s are: 

• The need to urinate frequently, including night-time loo visits. 


• Trouble delaying urination once the need is perceived, creating a sense of urinary urgency and often the much-feared "Latch Key Incontinence" issues.


Ann went down the medications road and until 2015 that seemed to be a satisfactory solution. However, in March 2015 we switched to Botox Injections into the bladder - and hey magic.  No bladder problems for around 10 months.  Since then there have been 6 injections sessions, with the 7th mentioned above to happen this week -  all at a hospital. 


This process is not yet available here in Australia as a Doctor's Surgery procedure.


Normally it is under a light general anesthetic and done as day surgery in a hospital operating room, but Ann has had two under a local anesthetic only.


The Botox in Bladder injections have certainly fixed all the issues associated with an OAB, including night time visits to the loo and the "Latch Key Incontinence" problem associated with urinary urgency.


Botox in the Bladder injections work for us, but each person is different and only a Urologist can determine the procedure suitability for individual patients.

Updated Compendium


The Compendium we produced for our own reference purposes has been updated with the addition of the Parkinson's Foundation PDF file called "Medications - a treatment guide to Parkinson's Disease". This is a 2020 publication.


The Compendium is now over 400 pages long and is best used in a digital format.  It can be downloaded using the button below.  Click on the button and, depending on how you are viewing this site, it will open in a new browser page asking you to download the file or you will be able to read the file on-line.