June 1st, 2023 – Parkinson’s Update


We have had our consultation with the Neurologist, Dr. Meenakshi Raj, at the Pindara Private Hospital Specialist Suites at Benowa on the Gold Coast in Queensland.


As that is a two and half hour drive from home, we stayed overnight in a hotel.


Dr Raj is a Neurologist who specialises in advanced treatments for Parkinson’s Disease. We were referred to her by our regular Neurologist for the specialised treatments that Dr Raj offers.


The consultation was 45 minutes and very detailed.


Ann was looking for two outcomes from the consultation:


Obtaining an improved medication therapy centering on medication delivery




Arranging the Botox for Saliva Control injections.


Dr Raj did not do any of the standard mobility tests as we were there on referral from our usual Neurologist, so Ann’s overall situation was well documented.


Ann remained seated on her scooter during the consultation.


Dr Raj concentrated on Ann’s current medication schedule and her reactions to the Levodopa dosage of 950 mg / day. She commented on the Dyskinesia Ann was displaying as she sat there and naturally noted that Ann did not walk into the surgery, but rather rode in on her scooter – an obvious indicator of the mobility issues that Ann has.


Dr Raj concluded that Ann was indeed a suitable candidate for the Duodopa Gel therapy and spent time discussing the option with us, outlining the benefits and the risks – minimal as they are.


Once Ann agreed it was an approach she was willing to try, Dr Raj set about organising the procedure to be done in July – just 6 weeks away.


And as an added bonus, Dr Raj said she could do the Saliva Botox injections at the same time if needed.


So, we left the Specialist Center with confirmed bookings for both the outcomes Ann was seeking.


An excellent result.


The Next Steps


1.Installing the Duodopa Gel Pump


Before deciding on using a Duodopa pump, it is necessary to test the impact it has on “on” and “off” periods and involuntary movements.


To do this, medical staff do a temporary placement of a Nasojejunal Tube (NJT) which, depending on the reaction to the intestinal gel and titration of Duodopa dosage, could be in place for up to 1 week.


With x-ray guidance, the Gastroenterologist will feed the NJT through the nose or mouth into the oesophagus, passing through to the stomach, and then into the duodenum or jejunum or small intestine.


Once the NJT is in place, the patient is transferred back to the ward.


On the ward, doctors and nurses specifically trained in Duodopa, will use the temporary NJT to adjust the Duodopa dose and gauge the response to the treatment.


To test the response to the medication, the patient is asked to do tests such as a gait test, finger taps, foot taps, finger to nose test and checks for rigidity and reflexes.


If the response to the Duodopa trial via the NJT is good, the medical team prepares the patient for the surgical placement of a PEJ Tube (Percutaneous Endoscopic Jejunostomy Tube) so they can begin using the Duodopa pump.


The dose of Duodopa is different for each person and may need adjustments to get the best dose that works to control the PD symptoms.


The flow rate and dosage amount is programmed into the pump by the medical team, a doctor or Duodopa nurse specialist.


This whole procedure involves a planned 7 day hospital stay in the Pindara Private Hospital at Benowa.


Clearly, I will not be travelling back and forward from Casino during this time, but will stay with our son at his house at Paradise Point, just 25 minutes away from the Hospital.


2.Botox for Saliva Control


Ann currently uses Asthma inhalers to control her excessive saliva, and while that process works well, she is keen to try the Botox injections.


The Botox for Saliva Control procedure is well-established with references to its usage dating back over 20 years. While the success rate is high, it does require re-treatment every 3 to 4 months.


Fortunately, Dr Raj also has rooms at Tweed Heads where follow up Botox injections can be administered at a local Radiology clinic. As Tweed Heads is just under two hours from home, it means an easy day trip for follow up injections.


The Duodopa Gel Therapy


The Duodopa Gel therapy can be used by people with Parkinson's disease when their many doses of oral levodopa taken during the day fail to keep them in their best state of mobility for enough of the waking day or provide a good quality of life.


Duodopa Gel is a combination of Levodopa and Carbidopa (ratio 4:1) in a gel for continuous intestinal infusion.


It allows a constant amount of Levodopa to be present in the blood, which can reduce motor fluctuations and so decrease the number of times people alternate between significant "off" time and uncontrolled movement (dyskinesia).


The gel is administered throughout the waking day via a pump connected in the morning and disconnected in the evening at bedtime.


The system consists of 4 parts:


1.External PEG tube. (Percutaneous Endoscopic Gastrostomy Tube) A tube that leads from the pump through the abdominal wall and into the stomach.


2.Internal J tube. (Jejunostomy Tube) A tube that is placed within the PEG tube through the stomach and into the small intestine, delivering Duodopa.


3.CADD-pump. (Computerised Ambulatory Delivery Device) The pump administers Duodopa continuously into the small intestine. The continuous and direct administration into the small intestine contributes to providing a more constant amount of Levodopa into the body through the day.


4.Medication cassette. A plastic container that holds the Duodopa Gel. This is connected to the pump and contains the equivalent of 20 tablets of 100mg Levodopa (2000mg total) and 25mg Carbidopa (500mg total). The cassette must be stored in the fridge and should be changed once a day (rarely twice).

Where we are in general terms.


We actually have an activity 5 days a week. Gym two days, Exercise class two days and cleaning service one day. The Gym and exercise class consume a half a day each time and the cleaning service eats up an afternoon.  So 5 days when half the day is consumed by various activities.


In addition, we the have the following:


2 consultations a year for each of:


Neurologist, Ophthalmologist, Dentist and Skin Cancer Clinic


Giving 8 appointments


Then there are


5 GP visits a year for Prescriptions and vaccinations

8 Physiotherapist sessions a year

8 Podiatrist sessions a year

2 Urologists sessions a year – one consultation one day surgery

1 Optometrist session a year for new glasses


Making another 24 appointments


For a total of 32 appointments a year that have to be fitted in and around our normal activities. It is fair to say we are somewhat busy!


Other Items


Ann is still relatively mobile, using a walker or scooter outdoors, negotiating the house indoors without a walker but using the aids we have installed.


Ann still showers and toilets herself and mostly dresses herself without assistance.


Ann was 80 years old in November 2022.