Tuesday, 17 June 2025
Ann’s Parkinson’s Update - A Recap
It is now twelve and a half years since Ann was diagnosed with Parkinson’s on the eve of her 70th birthday. Ann was 82 years old in November 2024 and Rex is 84.
The last 6 months have been a continuation of 2024. The Duodopa Pump settings are optimal and delivering a good QoL (Quality of Life) for Ann.
The Duodopa Pump Therapy
We had our annual home visit from the AbbVie Duodopa Nurse in early June and then two days later our 6 monthly Neurologist consultation.
The AbbVie Nurse was the same Nurse who monitored the fitting of the Duodopa Pump in July 2023 in the hospital. She stayed for an hour and did a thorough check of the pump and fittings including the stoma site and the spare back up pump.
The nurse was very pleased with Ann’s overall response to the pump and commented that Ann’s Levodopa dosages was still fairly low.
A copy of the home visit reports of the AbbVie Nurses are sent to the Neurologist involved.
So, two days later at the Neurologist consultation at Tweed Heads in NSW, the Neurologist had the Nurse’s report already in her system.
Neurologist Consultation – June 6th, 2025
The neurologist consultation itself was a standard 30-minute session and Ann was able to discuss her short list of issues and get meaningful answers.
As with the AbbVie Nurse, the Neurologist was pleased with Ann’s overall condition and commented that the Pump Settings were currently optimal and needed no changes.
Ann agreed that she would get the Saliva Botox injections that the Neurologist is qualified to administer, and this was set up for November this year at the Neurologist’s Gold Coast surgery in Queensland - a 2-hour drive away.
These injections are designed to reduce the excess saliva production that is fairly common with PD.
Ann wears her Duodopa Pump 15 hours a day and now has total of 1230 mg of Levodopa a day.
This would normally be called a moderate to high dosage of the oral version of the “Gold Standard” Levodopa medication used to control Parkinson’s Symptoms but is considered a low to moderate dosage in terms of Pump usage.
Where we are in general terms.
Little has changed since our last update. We continue to be busy most days of the week.
Trips away
We have managed two trips away so far this year – one in March and the other in June - both to beachside locations here in New South Wales.
These trips have been essential as a break away from the normal routine of managing our PD journey.
We will continue to have these trips as long as we find them useful.
Bladder Botox
Ann had her 12th Bladder Botox procedure on December 6th, 2024 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.
Medical and Allied Health
Our regular repeating medical and allied health appointments alone come to 26 a year – Neurologist, Urologist, Ophthalmologist are the specialists, then there are the General Practitioner, Skin Cancer Doctor, Podiatrist and lastly the Physiotherapist.
So one appointment every second week when spread evenly – which never happens of course. Add in some unexpected events, and we seem to be having a health associated appointment every week!
The rest of our week is consumed with normal activities – like it is a rare week that we do not have something else happening.
Exercise
Ann is still going to the GYM twice a week. All the routines have been upgraded so the workout is now both harder and longer. Average time is around 60 to 75 minutes of cardio work (exercise bike on intervals and treadmill) and weight work using 4 weight machines and one weight station (seated and lifting weights).
This is supplemented by two seated chair workouts with the Village exercise group that Ann organised. These workouts concentrate on cardio, weights and resistance bands sessions and last around 50 minutes.
Followed immediately by socialising over coffee and biscuits!
Daily Life
Ann still showers, toilets and dresses herself. Still does around half the meal preparation. All housework and grocery shopping is done by Rex.
We have a cleaner for two hours a week, subsidised by the Australian Federal Government. We pay $20 an hour – which is half the local commercial rates and use part of the $153 Carers Allowance Rex gets paid every 2 weeks to cover that payment. The remaining bit of the Carers Allowance just goes towards normal living costs.
The Carers Allowance is a benefit from the Federal Government that is paid to people classified as Carers. With an annual lump sum payment in June each year, it comes in at around $4600 for the year.