It is now 10 years since Ann was diagnosed withPD on the eve of her 70Th birthday in 2012. Ann turned 80 on November 17th last.
There have certainly been a lot of changes during the last 10years, all of them relatively minor, and creeping up on us slowly. But when you look at the overall situation, the change has been huge. Right down to how we have consultations with our Specialists.
Zoom was certainly not a common option for medicalconsultations around 10 years ago. So, in keeping with the times, we had a ZoomTelehealth Consultation with our Neurologist this morning.
Went well and the connection was good with clear imagery and sound. Sure beats a four to five hour round trip in the car for about the same amount of face to face time.
She told us she wanted to refer us on to another Neurologist as we had reached her skill and expertise limit.
Not exactly in those words, but she was very ethical and said she did not specialise in advanced PD Treatments that she thinks Ann now needs.
Like an Apomorphine Infusion Pump or a Duodopa Intestinal Gel Pump for the motor symptoms of PD and Botox injections for Saliva control.
We have already been down the Apomorphine Injection road and Ann is not keen to repeat the daily injection regime.
We had suspected for awhile that PD was not the main strength of our current Neurologist, and we are quite happy that she has referred us on to another Neurologist with more PD specialisation.
The new recommended Neurologist, assuming we can get in to see her, is also a Movement Disorder Specialist who has completed a Fellowship in Movement Disorders at the Royal Brisbane and Women’s Hospital.
And as icing on the cake, she is also a Medicare approved Botulinum toxin injector who performs injections for neurological conditions such as dystonia, hemi-facial spasm, blepharospasm, spasticity etc.
The current Neurologist did not want to increase the Levodopa beyond the 1200 mg/day dosage Ann is now on, but did agree to write us scripts for Madopar Rapid 50/12.5 that Ann can take in addition to her existing 1200 mg/day dosage.
There are certainly some interesting times ahead, but overall we are delighted that our existing Neurologist was so up front about her "limitations" and has referred us on to another more specialised PD Neurologist.
So after 10 years where are we at?
On balance, we are currently in a reasonable place.
The meds are working as intended, but not as effectively. This is standard for about 10 years in with PD. This means there are more frequent and longer “off times” during the day.
This reduction in effectiveness of the mainstay medication, Levodopa, is why our Neurologist has referred us onwards to a more specialised PD Neurologist.
Ann is currently on 1200 mg/dayof Levodopa taken via Madopar for her PD. Levodopa is the “Gold Standard” drug used to treat Parkinson’s Disease world wide. We are managing the daily timing and dosage ourselves, with the encouragement of our Neurologist.
1. Ann takes Pramipexole(Sifrol) .75 mg at night to aid with nightly leg pains – not restless legs syndrome (RLS).
Ann also takes Magnesium - equivalent to 200 mg of Magnesium per tablet - and uses a magnesium spray for instant relief as needed. Many PWPD (People With Parkinson’s Disease) use Magnesium in various forms to aid with PD associated leg pains.
2. Ann’s regular Bladder Botox injections still work really well and they have put an end to the dreaded OAB (Over Active Bladder), frequent nightly trips to the toilet and the really awful - and embarrassing - Latch Key Incontinence.
3. Ann is still doing all her own toileting and showering and has taken back some of the dressing assistance that I used to provide. We think this is due to overall increased flexibility and fitness from the exercise regime she follows.
4. We have settled into a good exercise regime of two days – three if possible – at the GYM for a 90 – 100 minute professionally designed exercise programme for Ann across 7 different GYM machines. After one 95 year old, we believe Ann is probably the second oldest GYM member. The 95 year old also has PD.
5.The Gym work is supplemented by two exercise sessions a week in the Club House in our Village. This is a group that Ann initiated and helps run (while seated in her walker!)
6. Our general health is good. I finally had a TURP procedure (Transurethral Resection of the Prostate) to forestall future urinary problems that would almost certainly have put me out of actionfor far longer then the TURP did. Our youngest son - only 55 years old - came and “looked after” Ann for the two nights I was in hospital.
He was just present really, as Ann does not need “looking after” in the true sense of the words. I was in for two nights only because I was being irrigated with a Catheter.
7. We have invested heavily in mobility aids and fall prevention and Ann has so far had only one fall - just last month - Ann was unhurt.
We also went the Apple watch way for Fall Alarmcapability.
8. I officially became a carer in June 2021, at least as far as the Federal Government is concerned, and they pay me a Carers Allowance each fortnight.
9. In October this year we finally started using a cleaner under the CHSP (Commonwealth HomeSupport Programme) for two hours each two weeks. While it does not sound like a lot, it has made a big difference for me both physically and psychologically.
That is funded by my Carers Allowance – and we are currently looking at using the Carers Allowance to get two hours each week, instead of each two weeks.
Only issue with that, will be theavailability of staff.
10. Our life is “unbalanced” at present – PD has taken over too much. We are both aware of this and know we need to make some changes. So, first step has been taken – we see the problem.
Next report sometime next year - sooner rather than later we hope - as we do need to get the medication treatment for Ann modified.