It is three months since our last Neurologist consultation on September 1st, and there has been a reasonable amount of activity on both the PD issues and treatment front and the preventive measures area.
In terms of the PD issues and treatment:
Ann has finally got the Constipation issue under control with assistance from our GP tweaking the Coloxyl with Senna dosages along with the normal Movicol. However, under-control is a somewhat loose term here. (Pun intended)
There have been occasions where control has been less than optimal and the “all singing all dancing” bidet has earned it’s keep.
The nightly Sifrol 475 mg (Pramipexole) has been successful in eliminating the leg pains at night. This medication can have some very serious side effects including, but not restricted to, hypersexuality, which so far has not manifested itself.
Ah well, can’t have wins all the time.
The planned toe operation has been postponed - three times now due to the border closures at the Queensland Border. On the last planned operation in November, we were able to obtain our border passes to enter Queensland, but our Podiatric Surgeon was denied a pass – so no surgeon – no operation.
We live in the so-called Border Bubble, and the surgeon does not – so Border passes for us, but no Border pass for her.
We suspect it will now be 2022 before the Queensland border is fully open in a meaningful way.
There has been much criticism of the Queensland Government border closures. They essentially shut of the State to the rest of the world.
However, here are the Covid-19 fatality numbers to date (if they are to be believed)
Queensland - 7 deaths, Population 5.2 Million
New South Wales - 633 deaths, Population 8.1 million
Victoria - 1390.deaths, Population 6.6 million.
So, Queensland tends to shrug off the closure criticism by referring to the numbers.
In the meantime, Ann continues to have her feet and toes managed as best as possible by the local podiatrist with visits every few weeks.
We now have 12 Stander Security poles installed in the house including one with handle inside the shower, one with handle beside the dining table and one with no handle beside the bed.
The other 9 are scattered throughout the house making our home look like a pole dancers paradise.
On a serious note, these poles are a real success, are used constantly and we recommend them to anyone with mobility issues.
We purchased a Trionic Veloped Tour from Sweden for Ann to use on her walking exercise around the Village. The Trionic is an all-terrain outdoor walker and comes in various model configurations. We purchased the one with 14 inch Pneumatic tyred wheels.
This is a large walker and is not suited for indoor use as it is too big.
It has been an outstanding success and was worth every penny of the relatively high purchase price of $2,300 Australian Dollars.
Ann continues with a 3 day a week GYM visits and has now added walking to her programme. We walk around the Village streets with the Trionic – so far only a short half kilometre - but with plans to gradually increase the length.
Had our regular Neurologist review consultation on the 8th of December.
The consult went very well.
Neurologist did the usual physical observation and then the review of the mobility video we take with us to each consultation.
The video has three standard scenes, all at approx. the same time of day. – walking outdoors with a cane, walking in the house hallway and simulated meal preparation activity in the kitchen with movement around the kitchen work stations.
Video length is normally around 70 – 80 seconds.
This time we included in the video annotation the times after medication dosage with the medication type and strength (e.g. 1.5 hours after Madopar 125/25)
We then went to our prepared list – which this time only had one item. A proposed medication tweak.
Ann was having trouble getting started in the mornings as the 7:00 am 2 x Madopar HBS 100/25 were not kicking in until late in the morning and the 8:00 pm 1 x Madopar 100/25 (not HBS) the evening before was long worn off.
A previous Neurologist had proposed a morning injection of Apomorphine to kick start the day. Ann has been down the Apomorphine road and finally stopped the self-injections due to some nausea and injection site soreness, even after careful site selection.
So, Ann did not wish to travel that particular road again. (We have boxes of spare needles but finally returned the out of date Apomorphine ampules to the Pharmacy for disposal).
In any case, th Neurologist had no trouble tweaking the medication to 7:00 am 1 x Madopar HBS 100/25 and 1 x Madopar 100/25 and adding a 1 x Madopar HBS 100/25 at bed time around 11:00 pm each night.
This takes the total daily Levodopa intake to 800mg over 6 doses – 4 x Madopar HBS 100/25 and 4 x Madopar 100/25.
The Neurologist is satisfied with that level of Levodopa medication.
Sifrol 475gm (Pramipexole) at night was left unchanged as it is doing well in managing the RLS and so far without any of the known side effects becoming apparent.
Still, it is a medication with an established reputation for very nasty side effects, so it is being carefully monitored.
We have now completed the “New Patient” close monitoring of 3 monthly consultations since we started with her in October 2020.
Our next appointment is in 6 months, and we are fine with that. She has stressed she is available if needed.
The Neurologist prefers to monitor her patients every 6 months or shorter but is caught with her being a private practice and the reduced Medicare rebate making her consultations expensive. This last 30 minute consult is $212 out of pocket for us.
She is not taking any more new patients – says she has 3,000 already.
She also has no problem with us tweaking the timing of the daily medication regime ourselves as she maintains we would know best what is working for Ann.
We are talking timing here – not overall amounts or new additions.
Allow 3 days for any changes we make to become apparent and before we make an additional change. For example, we make the new morning regime change now and then wait 3 days before we add the new evening Madopar dosage.
The Neurologist commented – again – that Ann is doing well given that it is 9 years since her diagnosis. She is very happy with Ann’s mobility as evidenced by the in-consultation observations and the regular videos.
I am a very happy little Vegemite. And a relieved one after being told in sparkling terms by our Neurologist yesterday that she is pleased with where I am in the Parkinson's scheme of things. My mother, who was diagnosed in her late 50's during the years when Parkinson's was treated with witch's brew and lemon tea, unfortunately progressed from being a vibrant and capable person to being a person both physically and mentally ravaged by the disease.
I have had to work hard not to think every change related to my own condition would move me another step toward a similar situation. In a few brief sentences, our Neurologist erased many of the fears which have accompanied during the process of living with Parkinson's.
That is very, very nice, don't you think.