A Recap
It is now 11 ½ years since Ann was diagnosed with Parkinson’s Disease - also known as just PD - on the eve of her 70th birthday and almost one year since Ann was moved on to the Duodopa Pump Therapy for managing her PD Symptoms.
People with PD do not manage the disease itself. All PD medications and therapies are aimed at managing the Symptoms of PD, both the visible motor and the unseen non-motor ones.
In the first 10 years of managing Ann’s PD symptoms, we became fairly familiar with all the oral and non-oral PD medications.
As the PD progressed in those first 10years, Ann moved through most of the available oral medications of Levodopa and agonists, the Rotigotine Transdermal System of patches, the subcutaneous injections of Apomorphine (very effective, but also somewhat painful).
Each medication change generated different results in symptom management and became a new learning experience for us as well.
At the end of 10 years, we were experts in the various PD medications available and their efficacy in managing PD symptoms.
Then came a whole new set of circumstances.
Out with the oral medications and in with the continuous delivery of medications via a wearable pump directly into the small intestine via a permanently attached tube to the stomach.
Now that definitely qualifies as a game changer.!
No more oral medications to worry about taking on time and managing food intake to ensure adequate absorption of the medication.
But while the Duodopa Pump Therapy has simplified medication management it has also been a very steep learning curve for us both.
The first 9 months of the Duodopa Therapy till March 2024 were a bit of a roller coaster ride as we worked to find the right pump settings for Ann. There are only general guidelines for pump settings, and each individual has to find their own settings by trial and error.
However, we finally did arrive at the much sought after “Sweet Spot” of medication delivery in April this year.
At our consultation this last week, our Neurologist was surprised and alarmed that Ann’s pump was unlocked, which means we are able to adjust the pump settings ourselves.
We had left the hospital a year ago with the pump unlocked and the Neurologist was unaware of this. The neurologist had also not picked up on this in the three post procedure consultations we had with her and the AbbVie Nurse up to December 2023.
So, a misstep in communications between them.
Pump lock states are a contentious issue. The AbbVie Nurse and our local Parkinson’s Nurse have no issue with Ann’s pump being fully unlocked. But it does apparently fly in the face the procedure recommended by the Duodopa manufacturer, AbbVie, and followed by our Neurologist.
That procedure is to provide the user with limited ability to change two settings while retaining Neurologist control over the pump. This is based on the fear that users may mis-medicate themselves if they can control the pump settings.
As this is a treatment for Advanced Parkinson’s where there are often cognitive issues at play, there may be some rationale behind the reasoning. However, it needs to be applied on a case-by-case basis.
Our AbbVie nurse, who worked with Ann and I every day she was in Hospital, had no concerns about us managing the pump ourselves. Nor did our local Government employed Parkinson’s Nurse have any concerns when he did his post procedure home visits to check on Ann and her progress with the pump therapy.
While our Neurologist was not best pleased with this, she accepted the situation while emphasising we should only change the settings every 4 – 6 weeks. This is to allow the brain to become adjusted to changed medication levels.
We agreed that we could do this.
The rest of the consultation went well with the Neurologist being pleased with Ann’s general physical state and her cognitive ability.
Our next appointment is in 6 months, December 2024.
I was either loading or unloading a walker into either the car or the E-Car every day. While a simple enough task, it is one we decided I did not need.
So, we began a hunt for another walker! I initially thought we would get a second Trionic Walker, but the price had leapt up to just under $3,000!!
That option was quickly discarded, and we eventually settled on an electric walker/wheelchair combination. This combo allows us to walk further in the village without me have to go fetch a vehicle if Ann gets too tired to walk anymore.
If Ann reaches that stage, she can just drive it home in wheelchair mode.
There are plenty of manual versions of this configuration, but the electric one allows for Ann to drive herself in wheelchair mode without needing a pusher.
It also helps preserve some feeling of independence.
Getting her Life Back
One of the main rationales for undergoing either of the Advanced Parkinson’s Therapies – the Deep Brain Stimulation (DBS) or the Duodopa Pump Therapy - is the significant improvement in Quality of Life (QOL) for the person with PD.
Comments such as “I got my life back” are very common after either procedure.
While Ann was aged out of the DBS scenario, and she probably did not have the appropriate symptoms either, that left just the Duodopa Pump Therapy.
And Ann did get her life back:
That happened when we finally hit the “sweet spot” of medication delivery via the Pump.
But back before Christmas 2023, and before the sweet spot” event, we decided we needed a trip away as a break from the daily living routine and the strictures imposed by PD.
Sounds simple doesn’t it, but the Pump adds a whole new level of complexity to travel.
Our first was a to visit our middle child and only daughter – now aged 58 – who lives 1,500 Klms away in Victoria. A three-day road trip.
Paramount for such a long road trip is the 15-litre compressor fridge and the Lithium auxiliary battery to power it. The fridge holds 3 weeks supply of the Duodopa Cassettes in their original cartons and keeps them in the desired temperature range of 2 to 8 deg C.
However, we had to purchase another fridge to hold our food etc. and we picked one up at the Christmas sales in a local camping goods store. A nice 21 litre budget range compressor fridge suitable for food storage etc.
Then there was the very real issue of drinking and tube flushing water. The highway to get to Victoria passes though the sparsely populated country areas of NSW. While all the towns clearly have potable drinking water, the taste often is sub-par.
So, we purchased a very small self-priming pump and standard water filter from Amazon to filter water and it worked a treat. Again, plugged into the auxiliary battery in the car. It was used to filter and fill our water bottles for drinking and tube flushing.
Ann’s electric Mobility scooter.
The 12-volt Mobility scooter hoist to get the scooter in and out of the car.
Ann’s Trionic Outdoor Walker.
A 15-litre fridge.
A 21 litre Fridge.
A 30-litre soft sided cooler with Duodopa Pump gear and medications.
A 10-litre soft sided cooler with non-PD medications – fortunately not many of those.
A technology box with all our tech gear like iPads and phones.
A laptop computer.
A tool box.
A 120-amp hour Lithium Phosphate battery.
A battery charger to charge the auxiliary battery whilst on the road.
A 1500-watt inverter.
A food box.
A portable toilet frame.
A portable shower seat.
A portable bed rail.
A 5-litre water container.
A tool box for the pump and filter.
Two overnight bags – overhead airplane locker size.
First aid kit.
And somewhere in there us.
And before you ask, our car is a Kia Carnival 8-seater SUV. The rear seats are folded down, the second-row middle seat has been removed and the 15 Litre fridge sits in its place.
We made the trip in Late February early March over 17 days staying in motels on all but three nights. We covered 3,600 Klms in total.
We spent 3 days at our daughter's house for a long overdue visit.
On the return trip home, we did only short driving days as we both found the 5 to 6 hour driving days on the way to Victoria too long for our 80 + year old selves.
Ann managed the trip well and thoroughly enjoyed the journey, especially when the car GPS unintentionally took us to some very pretty places.
We used all the mobility equipment we took with us - Mobility Scooter, Walker, Shower Chair, Toilet Rails, and the Bed Rail.
Ann used her inhaler to keep excess saliva at bay and continued her regular regimen of constipation management.
Urinary issues were under control thanks to Betmiga (Mirabegron tablet 25mg), so I was not looking for a public toilet every hour or so.!
However, after a small incident in the first week, Ann decided to have her 11th Bladder Botox procedure. We organised that via phone and it was done on March 16th, 2024.
This first trip proved that long distance road trips by car over two to three weeks with the Duodopa Pump Therapy are eminently doable.
Based on the success of the first trip, we then did another in April to Harrington, a seaside resort only a day’s drive from home. We stayed there for 6 nights at a riverside motel.
This time we had the much bigger All Terrain Trionic Veloped Walker in the back of the car for Ann to use on the beach, and that decision certainly paid off.
The highlight of the trip for Ann was getting on to the beach – for the first time in over 10 years.
This is another trip to the beach; this time two days drive down the Coast of NSW and planned for October – in Spring when it will be warmer but not too hot.
We will be staying in one place for the duration – 7 nights – and no doubt doing the walks on the beach again.!
With the huge improvement in Ann’s QOL, we now find we are busy with activities 7 days a week.
There are twice weekly GYM sessions at the local GYM and twice weekly Osteo Exercise sessions here in the Village Club House.
On the other three days, we walk on the Village streets with her new electric walker/wheelchair combo.
This level of exercise is necessary for slowing down the progression of PD Symptoms especially those that affect mobility and balance.
A significant side benefit of these 4 weekly sessions is the social interaction at the both the GYM, where Ann has been a member for 9 years, and the Village Osteo Exercise group comprising all our neighbours.
On a more mundane note, Ann is still relatively mobile, using a cane or walker outdoors while negotiating the house indoors just using the aids we have installed.
Ann still showers and toilets and dresses herself without assistance.
Ann has resumed most of the meal preparation and does some small housework, like bed making - but all other housework is done by Rex.
Rex uses his Federal Government Carers Allowance to pay for a cleaner for 2 hours a week. That has made a surprising difference to the household workload.
Ann was 81 years old in November 2023 and Rex is 83