PHASE 4: LIFE, PARKINSON'S & ME
Personal Theory
I have had a number of challenges in my life since birth and I would like to think that, over time, I have learnt something from each of those experiences: but, learnt what? In my honest opinion (IMHO), often, I think that my learning is only complete, if:
- There is a demonstration by me, as the learner, of what I have learnt; as well as
- Some form of test to check if I understand what I have learnt.
So, challenging Parkinson's, IMHO, may be doable if the person or people with Parkinson's (PwP) - that's me - tries to learn how such a disease reveals itself, what my analysis of it tells me, and then, can I do anything about it? The big question would be: do I tolerate it or do I fight it? |f I feel I am up for this challenge, then I can observe it and analyse it, find defence strategies and then fight it. Only once I have started this process can I consider the testing phase. All this is gradually revealed in this Post.
I will start my demonstration of what I have learnt by asking you, dear reader, to watch the short video below, on Parkinson's as a movement disorder.
📖 Unfreezing with Cueing
- (TIMER 0 - 1min38) The OFF period presents the PwP with the greatest challenge of PD when his muscle memory/forgetory (see 2020-2025 notes below) is at its worst and he is most vulnerable. This is evident in his shuffling gait and small steps. The video then shows how difficult it can be for him to be able to turn around 360°. But then, most of us PwP experience this daily, right?
- (TIMER 1min39 - 2min04) Although he is still in his OFF period, see how differently he moves when there is external visual and auditory cueing. I have been using external (voicing) and internal (silent singing and prompting) cueing for many years (2013-2025) especially while I was not on medication and this strategy has been very effective for me (➣ SEE my Post 27, as well as Post 42).
- (TIMER 2m05 - 2m31) Compare the effect of cueing above during the OFF phase with his ON phase when PD effects not visible as symptoms are under control. Look particularly at his gait control in relation to cueing during the OFF phase in PD.
📖 May 2022: Residence
My wife and I retired to a large apartment complex in Durban in March 2020, where we had an already refurbished, third-floor apartment prepared for our retirement. It overlooked a race course, which was cool, but the challenge was that we had to walk up six flights of stairs to reach the front door. At the time, 2020, we were still based in Pretoria.
Fate took charge in March 2020 when COVID-19 prompted a national lockdown while we were on holiday and, as we were unable to travel back to Pretoria, we decided to start our retirement in Durban. By this stage of my PD, having to climb six flights of stairs (48 steps) to access our new apartment was good exercise but not safe for me and my dodgy balance. So, in 2022, a few years later, we moved to a road level apartment in the same complex. Now, I only have two stairs to climb up from the road: Yay!
📖 June 2022: Caregiver
My wife sourced and hired a caregiver, Ms NM who had been working with PwP for a number of years. Prior to her arrival, I had had a few daily routines that suited my ego but had not established anything specifically focused on challenging PD or actively working against its impact.
I was not engaged in constructive activities to strengthen my brain, my body and my attitude towards PD. NM changed my daily lethargic slumps with specific stretching routines. I suffered with swollen ankles since 2019 but her regular foot massages have gotten rid of those swellings.
📖 August 2022: Parkinson's ZA
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The PZA approach is to facilitate a "Multidisciplinary 'Model of Care' established by PDMDS in 2001." Such an approach is rooted in rehabilitative treatment as well as lifestyle management for PwP rather than on a purely pharmaceutical approach. They draw on various therapies, on dance, on the creative arts, etc. to address the needs of and to support those PwP. I joined them in 2022. They offer free, weekly two-hour support sessions always facilitated by the PZA staff in conjunction with a consulting professional. There is also weekly table-tennis for those who are able to attend. Another way to challenge this onslaught of PD!
Their weekly two-hour sessions include warm-up and warm-down exercises that supplement specific activities. These include a focus on countering PD symptoms such as targeted stretching of the torso and limbs, music and movement, accompanied with some theory and illustrated handouts. A few times a year there are drawing and writing sessions, social gatherings, visiting specialists, as well as focussed sessions especially with the caregivers who are present.
📖 FAST-FORWARD TO 2025...
📖 2025: MUSCLES & MEMORY
Early in 2025 I started to feel quite weak both physically and mentally. The areas affected physically were my shoulders, arms (upper and lower areas), midriff (torso/tummy area) and my legs (from knees to ankles). I felt mentally exhausted too and I was depressed as I thought I had reached the final stage of life. And there was much FOG.
I believed the physical and the mental might have been linked. How? Well, let's engage in more hindsight (or speculation :-) and the presence of my muscles...
My speculation was that if I could encode an "amended message", then my brain, nerves and muscles might be able to decode it. Once received and activated, that amended code should jog my now PD-infected memory into action allowing me, for instance, to effectively move a limb. In Post 6, I wrote, tongue in cheek, about the likelihood of this lowered dopamine and 'unclear messaging' in my body leading to faulty muscle memory. I speculated that such a fault should then be regarded as "muscle forgetory" :-), and that it had probably led to my poor coordination and bumbling gait.
The presence of muscle memory is to allow muscles to repeat specific contraction and stretching actions after a period of non-activity. Neural pathways in the brain are strengthened when there is repetition of an action. My interpretation, is that there is a sort of diagram, inside a body's internal mapping system that is stored and is retrieved when required. Then there is also the notion of automaticity, when the action of swallowing food or playing a musical instrument may occur automatically without conscious thought. These are unconscious support systems that are attacked by PD.
However, the presence of PD generates the gradual and systematic depletion of dopamine resulting in weaker and weaker messaging being relayed. So, instead of a clear message instructing me, for example, to "Walk, by first placing my right foot forward", PD probably results in a garbled message instructing me to "Wak, by fit plcn my rgh fot fowd". The result is confusion in the decoding department of my body and the consequent freezing of actions. Hence, I have tried and believe that using my own forms of internal (counting, singing or humming silently) or external (music or the equivalent of a metronome) cueing (or what I had called "corrective messaging") is an invaluable substitute whether internally or externally generated. Cueing is a conscious support system for us PwP.
I had another revelation years ago while struggling to get a foot into a sandal. As the PD had started on my right side, my right foot gradually become less responsive to instructions, such as sliding feet into footwear. My right foot would freeze and the longer I stared at that foot the less responsive it would become! I was concerned that, after regular occurrences, the slowed action of sliding my right foot into footwear would be reinforced and stored as the new normal. This might gradually slow down to a freeze.
One morning, out of sheer frustration, I shut my eyes, cursed loudly and my right foot slid slowly into the right sandal without any freezing of my right foot! A moment of serendipity! I discovered that I could slip on my sandals simply by keeping my eyes closed: wow! Try closing your eyes. It works, even in the loo!
📖 Jan-Feb-Mar-Apr 2025
However, after years of so-called immunity/protection from Parkinson's via, amongst others, my Practiced cueing, PZA support, New homes, Caregiver support, Wife support and much Blog reflection on being parkinsed, my immunity was shattered. Over a few months, my PD crept up on me surreptitiously and then slowly throttled me during February/March/April 2025!
Well, in my defence, dear reader, in March 2025, I had just turned 73, and I had been diagnosed with PD when I was 61, so...
📖 January 2025
I had had conversations with my friends at the weekly PZA workshops and many were taking daily doses of laxatives because constipation was a side effect of taking anti-Parkinson's drugs (a-Pd). So maybe it was either my diet or growing anxiety.
📖 March 2025
Since 2017 I had been falling a couple of times a year. These were the mandatory PD falls :-). Fortunately, these falls left me with cuts, bruises and scrapes but, luckily, there were never any broken bones as a result of my annual falls. Then I had a fall on the night of 03 March and it drew my attention both to my age and the need to be more cautious. Since our move to Durban in 2020, our GP, Dr RSP, was constantly reminding me of the dangers of PD and that I should consider taking an a-Pd. Naturally, I was not keen, not until my March 2025 fall, just before going to bed.
That fall left me lying flat on my back, on the floor, and my wife was unable to lift me up. I lay there, thinking, and then realised that I needed to roll over onto all fours (onto my hands and legs, tummy on the floor). Then, from the floor, I would be able to push myself into an upright position, in order to drag myself onto the chair my wife had pushed into position near me. The entire episode (the fall, the solution and standing up) took 15 minutes, but represented a lifetime's worth of anxiety and learning.
📖 April-May 2025 RELIEF
So, when I went to Dr RSP on 30 April for a checkup and repeat scripts, I mentioned the fall. He immediately recommended that I see a neurologist, Prof VP, a movement disorder specialist. They shared consulting rooms over weekends and so my GP made the appointment for me. When we arrived (Saturday morning, 03 May), I was already weak, I could barely get out of the car and was unable to use my walking stick. It took ten minutes to get out of the car, to walk up ten stairs and to seat myself in the waiting room.
When Prof VP ushered us into his consulting room, I was unable to lift myself onto his bed for the examination, so he and my wife had to lift me up. An hour later he had completed his examination and was ready to prescribe my first anti-Parkinson's drugs: I was to try a daily drug and an overnight one.
CONCLUSION
I started the anti-Parkinson's drugs on 06 May and, so far, they have been working for me. I hope to get a few years' joy from this intervention! Currently, for my PD, I am on a chronic prescription of Sinemet (thrice daily) and Pramipexole overnight. I am still taking the daily dose of Brahmi and Ashwagandha as well as a chronic med for hypertension, something I have been taking for many years.
😃BSERVATIONS
UPSIDE
- My recovery since 06 May has been extraordinary. I walk upright without stooping, without a walking stick, and swing both arms during a brisk walk. YaY!
- Our complex has about 100 apartments and many residents have commented on my recovery, my walking action and my upright stance.
- For most of the day my gait is almost normal.
- Seldom do I experience freezing of actions.
- This ON period lasts for most of the day, so far, and I pray it lasts.
- Also, I am seldom constipated!
- A few fine motor skills have returned.
- My GP has noticed the physical change in me.
- (Together with the a-Pd I have to exercise daily and cycle regularly.)
- I am unable to walk around barefoot.
- The PD medication is not always available.
