Thursday, 23 June 2022

The last six months

It is just over 6 months since our last update on our journey with Parkinson’s Disease (PD).

In that time the following has happened.

Minor Surgical Interventions

• Arthroplasty Surgery performed on her left foot in the Miami Private Hospital Day Surgery unit at the Gold Coast in Queensland. This surgery has eliminated the every 10 day visits to a podiatrist to address the painful corn that had developed caused by the PD Dystonia in her foot.  Ann was almost unable to walk some days prior to this surgery.

Medical Inputs

• With the assistance of our GP here in Casino, eventually got ahead of (and on top of) the constipation issues that plagues nearly all PWPD (Persons With Parkinson’s Disease).  According to Ann’s’ “poo diary”, this improvement coincides with the start of the use of the PDCare Laser Device. (See below).

• However, a “poo diary” hardly constitutes a clinical assessment of device effectiveness.  Suffice it to say, Ann is finally on top of her constipation and she believes the PDCare Laser device did play a part in that.

• In case you are wondering, constipation plays havoc with the ability of the body to absorb and use PD medications.

Allied Health professional Inputs and Exercise

• Finally, been able to see an Exercise Physiologist to get a personally designed Gym Exercise Programme covering the use of 8 machines over a 90 minute session. She now visits the Gym two or three times a week with me as driver and general helper and rep counter. Rep counter, as in repetition of exercises counter within a set (It is a whole new language in the GYM world.).

• Significantly increased her exercise workload with the addition of twice weekly hour long exercise sessions here in the Village clubhouse.  These are all sitting exercise – no floor work

Equipment Additions – portable and in house

• Ann started using a Symbyx Biome PDCare Laser device aimed at gut care and maintenance. The jury is still out on the proven effectiveness of this device and a full clinical trial is scheduled to take place in Sydney this year.

• Become the proud owner of another Trionic Walker.  A standard 4 wheel Walker for use also outdoors but smaller and more useful in shops etc.  Like the Trionic Veloped Outdoor Walker, this one also has 14 inch pneumatic tyres making it far more comfortable to use. This new walker stays in the car, and is now used in preference to the portable electric scooter and hoist we also carry in the car, along with the refrigerator I use for grocery shopping.  (Hey, it is a REALLY BIG CAR!!).  These Trionic Walkers come from Sweden.

• She still has, and uses, her U-Step II Parkinson's specific indoor walker, but only now inside our house, and usually just as a seat and only occasionally to move around.

• Become the owner of an Apple Watch, series 7, for use as a fall detection device.  This watch can also make and receive phone calls and the ladies at her exercise group have nicknamed her Dickette Tracy as she uses the watch to call me to pick her up from the clubhouse at the end of the exercise programme.

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• Had a Stander security pole with handle installed inside our main shower. This is purely a safety precaution.

Other Issues

• Ann surrendered her driver’s licence to the NSW State Government as she felt it was no longer safe for her to drive as she was no longer sure she could  trust her reflexes in a normal driving situation.

• She now has no licence to drive.

• Had no falls.

Current Situation

Ann last saw her Neurologist in December 2021.

• In February this year, our Neurologist was flooded out of her premises in Lismore and withdrew her services from Lismore back to her base at Tweed Heads. So, we had our Neurologist consultation yesterday at Tweed Heads on the Queensland border – a two hour drive from home. 

• We had just on an hour with her and came away with the medication tweaks that Ann was seeking and advice on how best to manage the daily dosages. Neurologist increased the Levodopa-Benserazide daily dosage to provide a better daily experience and the Pramipexole Dihydrochloride to improve the night-time experience.

• The first one, the Levodopa, is the so called Gold Standard used world-wide in the treatment of Parkinson’s symptoms – specifically the Motor Symptoms.  It replaces the lost Dopamine in the brain.

• The second one, the Pramipexole, is used to treat restless legs which can be painful and wake the person with PD during the night. 

• Pramipexole is also a Dopamine Agonist. These Agonist drugs activate the Dopamine receptors in the brain and mimic the actions of Dopamine in the body.  However, not everyone reacts well to Pramipexole and the side effects can be devastating – the most common being compulsive behaviours – including, but not exclusively, over-sexuality leading to what some may call in-appropriate actions!

• Ann has been on low doses of this drug for almost a year for her leg pains at night.  So far there have no adverse effects.

• However, the Neurologist has ordered an x-ray and ultrasound of both knees to rule out knee issues as being the cause for the leg pains at night. The neurologist also told Ann she could move her dosages around during the day if necessary but to stay within the daily limits.

Next Steps

• Ann has to ease into the changes in the medication dosages – and this is normal practice for changes in PD medications.

• Ann has her next Bladder Botox injections at St Vincent’s Private Hospital this Friday and that normally takes a couple of days recovery time. 

• Usual Private Hospital Insurance excess of $200 applies, but as we have reached our Safety Net for medications under the Federal Government Pharmaceutical Benefits Scheme, no cost for any medications used at the Hospital.

• For our USA readers, when the safety net kicks in, all listed medications are free for the rest of the calendar year.  The cost of Ann’s PD medications means we now reach our limit in May so our medications are then free till end of December.

• Then next week the X-ray and ultrasound of both knees – bulk billed (means no cost to us for our USA readers).

Following all that, it is back to business as usual with our next Neurologist consultation in December this year via Telehealth, with the next face to face consultation in 12 months from now.