Following our June 2023 neurologist consultation, Ann was fitted with the Duodopa Pump at the Pindara Private Hospital on the Gold Coast in Queensland.

 

The Actual Procedure

 

July 7^th to July 13^th, 2023

 

The procedure commenced for Ann with the installation of a Nasal tube and the pump on July 7^th . 

 

This arrangement was in place for 5 days until July 12^th when the PEG-J into the abdomen was installed by a Gastroenterologist.  Ann then had another day in hospital as a precaution following the PEG-J installation.

 

Initial Results

 

Initial Pump dosage delivered 1636 mg of Levodopa over 16 hours.

 

Ann was also taking two Madopar 125 HBS (200 mg of Levodopa) at bedtime.  This meant the overall Levodopa dosage was 1836 mg a day over 16 hours.

 

Prior to the pump installation, Ann was taking 950 mg day plus the occasional 50 mg of Levodopa via Madopar Rapid, the dispersible emergency tablet, for an average 1050 mg day of Levodopa.

 

Clearly the initial dosages were way higher than past dosage of Levodopa over the same time of 16 hours a day.

 

But this fitted with what the Neurologist wanted as the dosage could then be lowered.

 

Mobility

 

Balance was way off - “Shot to hell” were her words.  Using the grab rails and security poles more than in the past.  We are both aware of a tendency to dependence on aids and Ann is working on regaining her confidence in her mobility.

 

Walking was back to the U-Step inside the house – but not all the time.  Ann had been walker free inside the house for over a year.  Again, lack of confidence was playing a part here.

 

Other Symptoms

 

Facial expression was back – frozen face had significantly diminished, and we were now getting smiles!

 

Excessive saliva was gone.  We were lining up for a Saliva Botox with the Neurologist and she said to wait, as often the steady dose of Levodopa via the pump fixes the issue.  And so, it did – at least for now!

 

Dyskinesia came back one day, and we think it was because we had experimented with splitting the bedtime dose of two Madopar 125 HBS into one at bedtime and one at around 2:30 to 3:00 am – when she is normally awake – courtesy of PD. 

 

We can’t be sure this was the reason for the Dyskinesia, but it was the only variable that was altered.

 

Post Procedure Issues

 

There was a significant issue with gas, bloating and constipation.  This was causing a fair amount of pain and increasing the level of anxiety for both of us.

 

Midnight walks down the hallway, baking soda and warm water, tummy massage, Paracetamol 625 tablets and so on were only marginally helping with the gas and associated pain. 

 

I was on the verge of using some of our stash of Oxycodone but held off as Oxycodone is a serious pain killer – not to be messed with lightly.

 

Taking Dulcolax tablets every night and 3 x Movicol sachets each day was having no result.

 

So, we used the BIG GUN of a Dulcolax suppository.

 

And, as Forest Gump said:

 

“Shit Happens”

 

So, somewhere along the way, we had fallen behind the constipation curve. 

 

Thursday, 27 July 2023 Two weeks post Procedure

 

On Thursday, 27 July 2023, two weeks after the PEG-J procedure, we had the first follow up meeting with our Neurologist and the AbbVie Duodopa Nurse in the Neurologist rooms at the Gold Coast.

 

We established with both the Neurologist and the Duodopa Nurse that Ann had gone backwards with Parkinson’s motor symptoms.

 

The initial pump settings for the Duodopa Gel delivery gel were 13 mL delivered first thing in the morning, then 4.3 mL per hour delivered continuously during the remainder of the time wearing the pump – normally 15 hours for Ann.  8:00 am till bedtime of 11:pm (15 hours)

 

Also available on demand was an Extra dose of 1.3 mL delivered on the press of a button.

 

These settings equated to 1550 mg of Levodopa over the 15 hours.  This assumed no usage of an Extra dose.

 

As Ann had been on approx. 1050 mg of Levodopa / day orally, the initial pump settings of 1550 mg over a day of 15 hours may have been too high, leading to dyskinesia certainly and maybe freezing, lack of balance and dystonia.

 

As a result of Ann's appearance, and our relating of Ann's symptoms following the pump procedure, the Neurologist, in consultation with the Duodopa Nurse, reduced the dosage and the Duodopa Nurse reset the pump.

 

The new dosage was 11 mL morning, 3.8 mL per hour continuous and 1 mL for the Extra dose – if required.  This new dosage equated to 1360 mg of Levodopa over a 15 hour day.

 

However, these new pump settings were still higher than the original oral dosages of Levodopa of 950 mg to 1050 mg a day - depending on the number of Madopar Rapid taken during the day to counter "Offs".

 

In summary a good consultation. We were both happy with the Neurologist and we had another follow up consultation in 6 weeks’ time on September 7^th, 2023.

 

September 7^th, 2023 – Eight weeks post procedure

 

We had our second post procedure consultation at the Neurologist rooms on the Gold Coast. Six weeks after the first post procedure consultation.

 

The Neurologist and Duodopa nurse were both pleased with Ann’s appearance and mobility and, following discussion, agreed to reduce the dosage amounts again.

 

The new settings were 1161 mg of Levodopa spread over the 15 1/5 hour day.

 

Then Ann was taking one Madopar 125 HBS (100 mg of Levodopa) at bedtime or during the night.

 

This meant the overall daily dosage of Levodopa was 1261 mg day – 1161 mg via the pump and 100 mg via capsules at bedtime.

 

This dosage was still up from the old amount of 1050 a day, depending on the number of dispersible tablets taken, and is an increase of around 20%.

 

A successful meeting, with the next consultation set for the standard time of three months out in December 2023

 

Results after 6 months July 12^th to January 12^th 2024
 

As the pump dosage was still higher than the oral Levodopa and causing Dyskinesia, we began titrating down the dosage amount via the pump settings.

 

We did this ourselves, with the approval of our local Parkinson’s Nurse (a State Government Department of Health employed Nurse) in consultation with both the AbbVie Nurse (A fully qualified Nurse Practitioner employed by the Drug Manufacturer, AbbVie) and our Neurologist based on the Gold Coast – two hours’ drive away.

 

By early November we reached a “sweet spot” in terms of Levodopa delivery with 865 mg of Levodopa being delivered over a 14.5-hour day.

 

This is considered a moderate to high daily dosage of Levodopa.  However, dosages of 2,000 mg a day of Levodopa are not unheard of.

 

This dosage is down from the old amount of 1050 a day, depending on the number of dispersible tablets taken.

 

So, an overall Levodopa decrease of around 17.5% from pre-pump times.

 

These are the key results to date:

 

No more “Offs”

No more dystonia in the toes in the morning

Excessive Saliva production has gone.

Significantly reduced nighttime leg cramps

Improved facial expression including smiles.

Improved handwriting

Improved walking gait

Improved feeling of wellbeing – Ann says she feels even all day.

 

Summary

 

There are certain mental gymnastics that are required with this procedure. 

 

The first one is that it is a treatment for Advanced PD.

 

“Aaarrggh, I have Advanced PD!

 

The only available next step is DBS!!”

 

The second one is the prospect of a hole in your abdomen and the associated PEG-J and tube hanging out of your body.

 

The third one is the Pump itself.  Having to wear it 16 hours a day, take it off to shower and so on.

 

And lastly, regular on-going care and attention of the Stoma and the intermittent replacement of tubes into your body and the associated hospital stays.

 

But would Ann do it again.

 

Absolutely – there is no way Ann will revert to oral Levodopa unless forced to by unforeseen circumstances.

 

Practical Considerations

 

The stoma – the site where the tube enters the body – needs daily care and attention.  This is not onerous, but it is a must do.

 

The PEG tubes carrying the gel must be flushed every night with clean water – preferably sterilized but not actually essential. A disposable plastic syringe holding 20 mL and fittings are used for this task

 

Care must be taken handling and wearing the pump to avoid accidently pulling the PEG tube out of the body or causing it to be displaced inside the body.

 

The pump is not waterproof and has to be removed for showering and then re-connected.

 

The Duodopa Gel cassettes are a cold chain medication. That means they are delivered by the pharmacy in an ice box with ice packs.

 

Subsequently the Gel must be stored within a temperature range of 2 to 8 degrees Celsius. 

 

The gel has an “out of refrigerator” shelf life of 24 hours.

 

The shelf life of the gel under refrigeration is 3 months only.

 

A months’ supply of the gel will take up almost all the space of one shelf in a household refrigerator.

 

The normal household refrigerator struggles to achieve and hold this steady temperature range.

 

As we did not need the worry of the medication not being kept at the desired temperature, we purchased a pharmacy grade vaccine fridge to hold the Gel.

 

Fortunately, the Gel is on the PBS.
 

The pharmaceutical company that supplies the Duodopa, AbbVie, also supplies the pumps, clothing and batteries at no cost to the end user.

 

Normal time to get the pump installed involves a 7-to-8-day hospital stay. The first 6 – 7 days have the patient using the pump through a nasal tube.  When this proves the patient is going to benefit from the procedure, the actual PEG-J is installed.

 

And then a further day in hospital is required to ensure there are no complications from the minor surgery of installing the PEG-J.
 

Where we are in general terms.

 

We have an activity 5 days a week.

 

Regular GYM and Osteo Exercise sessions were restarted in early September.

 

We now have 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. 

 

Remember, most people clean their house before the cleaning service arrives – can’t have the cleaner thinking you keep a dirty house.

 

We have started a daily walk on the Village streets again with her outdoor walker.

 

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 does some of the meal preparation but all housework and around half the meal preparation is done by Rex.

 

Extra attention is paid to constipation to make sure we stay ahead of the constipation curve.

 

Rex receives Carers Allowance and that is used to fund the cleaning service.

 

Ann was 81 years old in November 2023 and Rex is 82.