Six months since Ann saw Dr. Baumann, her Neurologist – and yet it seems like a lifetime – as I am sure it does for many.
The Covid-19 pandemic has certainly impacted the lives of people worldwide and we have come through this period relatively un-scathed.
We have both been fully vaccinated – despite Australia really lagging the world in terms of vaccinated population numbers.
Casino, where we live, is a rural town of 9,500 souls a long way from anywhere and has not had any Covid-19 infections.
It is 2 hours North by road to the nearest major population center of the Gold Coast in Queensland – Population 550,000 and 6 hours South by road to Newcastle - Population 320,000 – with nothing of any size – and hence major big city type facilities - in between in either direction.
If you are at death’s door the local State Emergency Service Helicopter will fly you to the Gold Coast, but if you have a foot through that door, then they will overfly the Gold Coast and go another hour (by road) North to Brisbane, Population 2.2 Million.
Just to complete the picture, to the East is the Pacific ocean an hour away and then 9,200 miles to South America and to the West there is nothing for 2,100 miles as you cross Australia to reach the Indian Ocean and then head west only 6,500 miles to Africa where you will find Johannesburg.
You could say Casino is a little isolated and probably because of that, has been Covid-19 free!
But back to business.
ANN’S PROGRESS WITH PARKINSON’S
A brief recap. Ann was diagnosed with Parkinson's on November 16th, 2012 on the eve of her 70th birthday and is now almost 9 years into the journey. Ann will be 79 on November 17th, 2021.
Parkinson's manifests itself in two ways - one you can see - the so-called Motor Symptoms like:
Tremor, Stooped posture, Shuffled gait, Freezing, Dyskinisea, Frozen face and so on.
And ones you can't see, the Non-motor Symptoms, which include:
Pain, Fatigue, Low blood pressure, Restless legs, Bladder and bowel problems, Skin and sweating issues, Sleep disorders, Swallowing and saliva control, Speech and communication issues, Eye problems, Foot care and Dental health
And also can include, just to make life really difficult:
Mental health issues such as Mild memory and thinking problems, Anxiety, Dementia and Depression
For Ann, there has not been a lot of change once the medication adjustments kicked in back in February 2021 – which is actually very good news.
In the PD world, no change or minimal change is generally good news except when you are modifying medications to achieve an improvement. Then obviously you do want change.
Motor Symptoms are largely under control with only a slight tremor showing itself on occasion. Control of the tremor is a trade-off - too much medication to control the tremor and you get Dyskinesia - which is worse. Regular exercise, despite Covid-19 shutdown of the Gym, has reduced the Physiotherapy visits to address posture issues from every two weeks to every 4 to 6 weeks.
Non-motor symptoms are slightly worse. Saliva control, speech and feet issues are all continuing problems. Feet became an issue that had to be addressed with surgery and Saliva control is due to be assessed by an Ear Nose and Throat specialist in September 2021.
The feet surgery late in July will hopefully eliminate the every 10 day visit to the Podiatrist.
The medication changes introduced in February 2021 have been successful. Ann was over-medicated as evidenced by the dyskinesia that was happening. Current Levodopa intake is near the optimum at 700mg a day taken in 5 doses of Madopar, one of the PD drug used in Australia.
There was an immediate improvement in Ann’s PD motor functions after the medications adjustment in February 2021 and that was the desired outcome. The improvements happened virtually overnight. After that, we were looking for little to no change over the months from February to August 2021.
And that has largely been the case.
In about May 2021, we became aware of the impact that Magnesium can have on PD symptoms, specifically leg pain at night. Following some research, Ann has started to take Magnesium tablets, available over the counter, to address leg pains at night, and this has worked for her – as it seems to have done for a lot of other people with PD.
There have been no other medication issues in the last 6 months.
During the six months since February, 2021 Ann has hardly used the U-Step Walker and generally does not use a cane, except when we go to the Gym when she uses it while standing while I get her gear and close up the car etc.
Just a stability issue, as standing in the middle of a car park with nothing nearby to hold on to, is not the smartest thing for Ann to do.
We are making more use of the portable scooter when we go out as walking for more than a couple of hundred meters is exhausting for Ann.
There have been no falls – which is an achievement as falls are common for people with PD.
Mobility Aids – Security Poles
We have installed a total of 7 security poles in the house. These are a Stander brand product and look like a Pole Dancing pole as used by ladies in a certain industry. Or they look like the jacks used in the construction industry between a floor and a ceiling. Stander is a USA company and their products are made in China. One of the poles has a handle and is currently in the guest bathroom along with a standard pole without a handle.
They are installed in open areas of the house and act as grab rails – something to grab hold of as you are crossing an open area. Been very successful with one in each bathroom, one in Ann's office, two in the lounge and one in the kitchen/dining area. They all get a lot of use.
Mobility Aids – Vehicle Accessories
We have also purchased a Handy Bar that goes in the door catch of a car and the companion Handy Grab that goes over a car door – both to assist with exiting a vehicle. They are also Stander products, but there are any number of similar products available.
Mobility Aids - Bedroom
Something from left field that really works has been the Wonder Sheet. This is a fitted bed sheet with a satin insert which covers the middle section of the sheet and is designed to make turning over in bed a whole lot easier.
Mobility Aids – Bathroom
While not strictly a mobility aid, the installation of a Bidet on top of the en-suite toilet has been an absolute plus for Ann. We went for a top of the range model complete with dual adjustable front and rear nozzles, heated seat, warm water jets, warm air drying, remote control etc.
It also gave the added height needed for ease of use of the toilet and replaced the seat riser we already had on the toilet.
Medical Issues - The Feet.
Ann finally has to have a foot operation – toes actually. An arthroplasty on the little toe of her left foot and the tendons cut on three toes of the same foot. This is after doing battle for two years with Podiatrist visits every two weeks for foot care. This will be a permanent fix for the curling toes problem caused by PD for that foot.
Ann will still need to wear her custom made orthotic inserts in her Mary Jane shoes, workman style zip side boots (no steel caps though) and her bedroom slippers. These orthotics have had a major impact on her walking ability and foot comfort. Having orthotics custom made from casts of your feet is probably the most effective option for dealing with the feet issues caused by PD – aside from surgery.
The operation has been postponed because of Covid-19 travel restrictions and is now planned for later in this year. In the meantime the local Podiatrist will continue to manage her foot issues.
Medical Issues - The Eyes
PD can cause drooping eyelids – as can plain old fashioned age. In Ann’s case the drooping had become so bad her vision was being compromised.
So, day surgery by our Ophthalmologist in June 2021 fixed that issue. Eyes are now wide open and SURPRISE because Ann can see better her confidence while walking has been given a boost – because she can see better.
A truly un-expected benefit of the surgery.
Medical Issues - The Bladder
The Bladder botox of Last November is holding up well and the next one is scheduled for October/November. This will be Botox treatment number 8.
Medical Issues -The Hearing
Not PD related, but we both had hearing aids fitted in February 2021 so we can no longer use the excuse “I can’t hear you” and instead now say “I don’t have my hearing aids in”!
Ah well, you have to adapt.
NON MEDICAL AND NON PD STUFF
There has been a marked shift in how we manage day to day.
Nearly all housework is now done by Rex and about 50% of the meal cooking. This includes all the laundry, bed making, floor cleaning and so on.
Ironing is a thing of the past.!
Ann gets some assistance with dressing, but is fine with the rest of her personal activities.
Just for the fun of it, I went on line to the relevant Federal Government Department and applied for a carers allowance – fully expecting to be refused.
Much to our surprise, I was approved for an allowance and it is being paid at the rate of $66 a week – non-taxable - with an additional annual payment of $600.!
So, I am now officially a carer.
Ann has temporarily let her Drivers licence lapse and now does not drive. So, I am the chauffer.
Ann did not feel confident enough to do the on road driving test required by her Neurologist before said Neurologist would sign off on her annual medical assessment for driver licence renewal. The annual medical assessment for driver licence renewal is required by our State Government because of her PD. I am required to have the same annual medical assessment because of my age, 80.
When I turn 85 – 5 years from now - I will need to do an on road test in addition to the medical assessment.
All grocery shopping is now done by Rex, who uses an app on his phone to manage the shopping.
When we do go together, we have a Handicapped Parking Permit that is recognised Australia wide and that makes a big difference as there is nearly always a Handicapped parking space available. The fine for illegal parking in a Handicapped spot is just under $600 in NSW or roughly 50% of an average weekly wage – so a significant deterrent.
And then we use the portable scooter to get around the shop or the mall. Yes, we do have a mall in Lismore, population 40,000 – only 30 minutes away.
The Covid-19 situation has wreaked havoc with restaurants and clubs etc, and eating out has been severely curtailed.
However, we have not only renewed our two existing club memberships but also added another club in Ballina – a hour’s drive away – and had lunch there just last week when we were in Ballina.
We certainly intend to keep going out for meals etc when we can, as we are now well practiced in using the portable scooter in the clubs. And eating out was assisted by the State Government giving everyone $100 each to spend on entertainment and dining out – all to assist in kick starting the economy following various Covid-19 lock downs.
We have spent the dining out component of ours already – two nice nights out at the local Golf Club used up the dining component of $50 each.
Exercise is finally recognised as vital in managing and living with PD.
8 years ago, that was certainly not the case. And exercise is just as important for the “carer” of the person with PD (or PWP as they are known in the world of Parkinson’s shorthand).
Again, as with restaurants, Gym activity was severely disrupted by the Cvid-19 situation but Ann is now back in the Gym 3 days a week and is slowly increasing her work load, especially on the upright bicycle.
We schedule three days a week for Gym for Ann and walking for me.
We spend 45 minutes at the Gym and then I walk 5 Klm for an hour when we get back from the Gym. Those two activities, and the associated lead-in and lead-out times, chew up most of the day for us.