It is now 12 years since Ann was diagnosed with Parkinson’s Disease - also known as just PD - on the eve of her 70th birthday and 18 months 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.
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.
This was our third "normal consultation" with Ann's Neurologist. The previous ones had all been about getting the Duodopa Pump installed and settled. The so-called "normal consultations" are really just your standard PD monitoring consultations.
Our Neurologist was pleased with Ann’s appearance and “condition.”
We briefly discussed the Pump settings and the extra oral doses of Levodopa that Ann is taking at night and in the morning. The neurologist was Ok with what we were doing.
We discussed the Botox for Saliva control, and we agreed Ann would try a medication that tends to dry up the mouth for 3 months.
If that was not effective, then we can make an appointment for the Botox injections. The Neurologist does these once a month.
Overall, a good consultation.
We had role played the consultation extensively, so Ann was able to answer the Neurologists questions with clarity and certainty.
Ann also had her own questions well-rehearsed and got them all asked and answered.
Our next appointment is in 6 months, mid 2025 or earlier depending on the saliva Botox issue.
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.
That happened when we finally hit the “sweet spot” of medication delivery via the Pump.
We have had three trips away this year.
The first was a to visit our middle child and only daughter – now aged 58 – who lives 1,500 Klms away in Victoria. We made the trip in Late February early March over 17 days staying in motels on all but three nights.
We spent 3 days at our daughter's house for a long overdue visit.
Our second trip was in April to a seaside resort only a day’s drive from home. We stayed there for 6 nights at a riverside motel.
Our third trip was in October to another beachside location; this time two days drive down the Coast of NSW. We stayed there for 7 nights, and Ann had her walks on the beach to watch the surf rolling in.
Ann had her 12th Bladder Botox procedure on December 6th, and this has worked well – as always. The next is booked with the Urologist for September 2025 and the Hospital Paperwork is already done.
So now it is just a routine procedure.
Little has changed since our last update. We continue to be busy most days of the week.
Continuing exercise is a vital part of managing PD symptoms and this keeps us both very busy.
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 all housework is done by Rex.
We have a cleaner for 2 hours a week and that has made a surprising difference to the household workload.
Ann was 82 years old in November 2024 and Rex is 83. Ann wears her Duodopa Pump 15 hours a day and has total of 1144 mg of Levodopa a day.
This is a moderate to high dosage of the “Gold Standard” Levodopa medication used to control Parkinson’s Symptoms.