(64) Hindsight for Foresight (Phase 4)

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:  

1. There is a demonstration by me, as the learner, of what I have learnt; as well as 
2. 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 

In this short (2m 31s) YouTube video sourced from a respected medical research journal, The Lancet, is the Freezing of Gait (FOG), where "gait" is to be seen in the context of Parkinson's Disease (PD) and refers to the way of walking that's exhibited by most people with PD. 

This video presents a carer with a PD patient during his OFF period (i.e. when the effects of medication have worn off so PD symptoms such as tremors and freezing are at their worst) as well as during his ON period (i.e. when PD medication is effective and symptoms are controlled). Also, there is visual and auditory cueing at work.

 

1. (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? 
2. (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).
3. (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.  

📖 January 2022: Ayurveda

After being Parkinson's-drug free since my diagnosis in 2013, and finding alternative approaches such as exercise routines, ankle/wrist weights and biokinetics, all of which worked relatively well, I tried a complementary therapy to challenge Parkinson's: Ayurveda. After a lifestyle change and three months of dietary preparation in 2021, I started the new Ayurveda approach in January 2022.

The daily transcendental meditation and Yogic breathing were familiar as I have been meditating for many years and was introduced to alternate nostril breathing as a teenager. My Ayurveda doctor (TRG) added a few additional exercises he thought would help me to adjust. In addition, there was daily plant-based medication specifically to help me cope with Parkinson's Disease (PD): 

1. HP500 (3 capsules daily) a natural substitute for levodopa that contains Mucuna Pruriens; 

2. Ashwagandha (2 capsules daily) to reduce stress and help with sleep; and 

3. Brahmi (2 capsules daily), regarded as a "cognitive enhancer". 

I stuck with the PD defence programme suggested by Dr TRG and I was fine for over three years, until 2025, but more of that later, dear reader: let's get back to my timeline and unfolding events.

📖 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

Late in 2022, a new PD support group called Parkinson's ZA (PZA) was launched. They had established a partnership with an India-based organisation known as the Parkinson's Disease and Movement Disorder Society (PDMDS). Subsequently, they launched a PDMDS support group in Durban, the first of its kind in KwaZulu-Natal. 

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...

I had been thinking about the negative effects of muscle memory since early 2020 in Post 5 when I wrote about correcting the unclear messaging that was leading to poor coordination, all courtesy of my PD. I decided it was the result of lowered dopamine levels caused by the impact of having PD. I believed that I needed to adapt the nerve and muscle code and introduce new "corrective messaging" to improve my coordination. (Later I discovered my concept of "corrective messaging" existed but was referred to in the literature as "cueing".) So, my PD resulted in unclear messaging being sent and received in my body. A challenge!

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

After years of what I think of as protection from the extreme effects (i.e. "objective", observable impact of PD such as my limb tremors and freezing of gait) as well as the symptoms (i.e. the "subjective" impact of PD such as my tiredness or my sore body) I think I have developed a cloak of immunity. This might be Harry Potterish, but it's what I believe...

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... 

PERSONAL THEORY  During the post-diagnosis years (2013-2021), while I had been challenging PD without herbal remedies or pharma products, something happened inside me. Like immunity, I was developing a form of resistance against some symptoms of PD. 

I believe I had started to generate a cloak of physiological and psychological stubbornness. This would be similar to accepting that our bodies can be a placebo, as presented in Dispenza's "You are the Placebo" (⇦link to a pdf copy)! Or believing in the power of the mind and body and our ability to fight cancer as described in Brandon Bays' The Journey (⇦ link to her audiobook).

So, in 2022 when I started with the Ayurveda regime, my body and mind accepted the natural, non-pharmacuetic approach for those few years. I believed in the effect. My mind and body accepted it. But continuous loss of dopamine and my age made the PD difficult to control...     

📖 January 2025

Besides my weakening body, January started with weekly bouts of constipation, initially occurring on alternate days. I decided neither to stress over it nor to ask my GP to help me. Instead I relaxed and allowed my tummy to work when it could rather than force it. 

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.)

DOWNSIDE

• I am unable to walk around barefoot.
• The PD medication is not always available.

I am a happy chappy since the 03 May appointment with Prof VP and the recommended a-Pd regime since 06 May. What a rollercoaster ride since 2013. Phew! Till next time, dear reader...

(42) My PD & I: cueing and observations!

BLOG STATISTICS

☺2138 "viewders" between April 2020 & April 2023.

☺Readers' countries = 1. South Africa (majority), 2. Russia, 3. Europe, then Australia, Canada, India, USA, New Zealand and Indonesia.  

☺Top referring URL = Facebook.     

Introduction 

😁 There has been a gradual increase in the readership of this Blog as well as their countries of origin: South Africans represent the majority, Russians second, a growing number of Europeans (presently 9 countries) and others are curious. This is heartwarming and makes the exercise of conceiving, developing and writing these posts a pleasant task! Thank you all, dear readers, for your sustained interest. 

😐 My Parkinson's Disease (PD), however, is making me unhappy. It's becoming an annoying part of life, gnawing away at my body and occasionally at my brain. As you know, I first noticed my right leg quivering early in 2012 so my PD has been around for at least twelve years and it's getting stronger and more dominant. Two years ago I was advised to stop driving = I listened. Last year I was also advised to hire a caregiver = I listened. I was advised by two neurologists (2013 & 2021) to take PD medication (most recently, Sinemet), but some of the side-effects I had been reading about were disturbing, so = I did not listen. 

I did not listen as I wanted to explore. I found one alternative in the natural remedies of the Ayurvedic approach (where their medicines are extracts of herbs and spices). Late in 2021 I engaged with an Ayurveda specialist and then started my PD treatment. Also, I gradually unearthed a range of customised PD exercises online (such as Gentle Chair Yoga, 5 minute Tai Chi), weekly Parkinson's ZA occupational therapy and cycling but one issue persists, namely my poor balance and dizziness. It is likely to be the result of my PD and/or my low blood sugar and/or an ear issue (I've ruled out high blood pressure). 

Today I wish to revisit cueing and spotting in the context of my PD support system. (See cueing in posts 27, 28, 38 and spotting in posts 6, 7, 38, 27). 

Reflecting on cueing strategies

As you know, in March 2020 we moved permanently to Durban into a third-floor apartment with four flights of stairs from the ground level to our front door. Initially, the stair-climbing was doable. When PD started to slow me down in 2021, I started to struggle on these stairs. I had already been using spotting as an external cueing strategy when dressing as it assisted my poor balance (coupled with my weakening arms and legs). In the context of PD, this 'weakening' is also referred to as "passive limb movement". As my balance issue had responded positively to spotting, I wondered if sequences of phrasing -- such as saying to myself "heel-toe heel-toe" -- could assist me to walk down and up the stairs in a measured manner: it did! This was my cueing, version 1.0, and I was walking confidently on stairs.

Later, I substituted the words with numbers. So, during late 2021, my "heel-toe" cue, a concrete concept to encourage my feet to move, evolved into my saying "1-2 1-2" which was more abstract. I was impressed with this adaptation to version 2.0 and believed that my using numbers (i.e. an 'abstract' representation to activate my movement) was superior to using words (i.e. a 'concrete' representation) when on the stairs. But, my reasoning was flawed. 

Moving from concrete to abstract was a mental exercise but it was not helping my motion. During February/March 2023 I noticed that when walking outside I would freeze or slow down quite often and I had no rhythm although I was walking at road-level. Actually, I had had more "rhythm" in 2022 when I navigated four flights of stairs at the old third-floor apartment! Grrr... 

👀OBSERVATION 1: what I neglected to consider was that a shift in my hand dominance (see post 8) might have affected my feet too. I was born with right hand dominance but since PD has weakened my right side, and that dominance has shifted to the left hand for most actions except handwriting! I even type with a dominant left hand! So, my left foot might have become a functioning right foot, as it were, resulting in internal confusion when using numbers ("1-2 1-2") for cueing rather than words indicating an actual foot ("right-left" or "heel-toe"). As soon as I changed my cueing to a clearer interpretation for my mind to interpret and execute, my walking rhythm returned. Also, for short periods I began to swing both arms rather than just the left arm.    

👀OBSERVATION 2: a walk around all three wings takes fifteen minutes but if I walk continuously without a break, then there's a tendency for my legs to go into festination mode where I'd be taking quicker, shorter steps and having difficulty in stopping. It is a scary result of being parkinsed! So, my solution has been to always take short breaks in order to break the rhythm of walking, especially down slight declines or slopes. And that helps. There are useful observations in gait re-education.

My cueing procedure has adapted and in the process I think I have learnt more about the inherent challenges facing the trial-and-error process of treating PD in a drug-free approach, as discussed above.  

My PD - almost a teenager! 

My PD is now 12 years old, technically an adolescent and almost a teenager. This errant child is showing signs of rebellion and bad behaviour and I wish I could ground it!  Why? Well, it thrives on being in me but independent of me, and is a know-it-all! 

👀OBSERVATION 3: the confusion might stem from my being on drug-free treatment. So, when I'm "well", then my brain responds to the Ayurvedic regime as something normal. But, when I'm really "sick" and take drugs (e.g. for a few weeks in March 2023 I had a severe cold with excessive dry cough resulting in my GP prescribing antibiotics - hence the delay in this Post 42), then my PD symptoms tend to worsen. I'm less mobile, I tremor more and tend to be more dizzy. And like a teenager, PD will not listen to me...

I should develop a cue for my PD to take a long walk on its own and never return! Till next time, dear reader, do take care.   

(38) MY PD: positive reflection & activities.

😀 Smile with me: Tremor Knower 😀

Because of my tremors, the following rumours are not true:

(:-) The local SPCA is hiring me to pat their dogs; and 

(:-) a local fireworks company is hiring me to light matches quickly.

Labeling my PD

Parkinson's Disease (PD) rattles me on a daily basis. My monthly Parkinson's Disease (PD) out-poring in this blog releases part of my agitation, the completed post being the equivalent of a mild sedative. (Sigh!)  

When trying to define a PD moment or to describe my response to it or to share a strategy, it is authentic. What I'm grappling with is a broad label which will aptly describe this. Are there such labels? Does it matter if there aren't and I or you create them? Let's go down this rabbit hole, dear reader, to see if...

YIN & YANG My PD is something cold and dark inside me. In previous posts I have described my PD as experiencing a terrorist strike on my health and having my body hijacked. It's a scary space in which to be. While such thinking about my PD becomes a source of negative energy representing a cold, dark part of my life, writing this blog from a first person perspective (that is, subjectively) also allows me to view my PD from a distance (almost "objectively") and to accept my circumstances! 

In short, my Blog transforms the stark, dark, cold reality of my PD into stories that are a source of positive energy, that make me feel bright and warm when published. Maybe I'm reading too much into my writing but what I'm expressing is a set of feelings that exist as a pair of opposites, like the notion of Yin & Yang.

In the principle of Yin & Yang, where positive and negative elements always coexist (like the PD in me), the ideal is to find a balance between the dark (Yin) and the light (Yang) as an increase in the one means a decrease in the other. I have found the semblance of balance via a monthly blog, that sort of falls into the category of Yin & Yang! There certainly is a co-existence of the 'positive' and the 'negative'! So maybe this is apt...            

 

PINKY & BRAIN In Post 16 I assumed my PD struggle was represented by laboratory mice, where my PD is "the character Brain, while my resistance and fightback is represented as Pinky. The more PD (that is, a Brain) tries to convince me that I am on a downward spiral, the more I resist and present a conscious fightback so that my muscle memory (driven by a Pinky) responds appropriately." 

This appears to be another label and it resembles Yin & Yang. In addition, the Pinky (alter ego = "other I") & Brain (ego) analogy connects the "subjective", first-person perspective of me, as information source and a parkinsed person, to the "objective" nature of the the completed product, this Blog.    

I will allow you, dear reader, to decide whether Yin & Yang or Pinky & Brain is the more appropriate label to describe my PD. (While both are apt, I'm leaning toward one. If you have an opinion, then PLEASE EMAIL IT TO ME, together with the request below.) The reason I am engaging you in this process is my growing sense of frustration with my hijacked state. Walking is increasingly becoming an issue so I have to use greater amounts of will power each week to walk outside and to exercise inside. And, remember, I have been more sedentary this year! 

REQUEST: paint-by-numbers project

I'm still prone to procrastinate, something that you also may be experiencing, so let me make this request. A month ago I bought my first paint-by-numbers kit - containing numbered pots of paint with corresponding numbers on a printed picture on canvas - and it is still on my bookshelf. I'd like to complete this project before my next post. Sharing this info may energise me into doing it, so please read on! 

👀  REQUEST: PLEASE EMAIL ME this following question BY 30 NOVEMBER 2022: Ari, is your paint-by-numbers project complete? Each reader who sends me this reminder (just put the question in the Subject line of your email) will receive a copy of the completed picture by email. OK?  <ari.naidoo@gmail.com> 👀   

MY PD: November 2022

I'm frustrated and still trying to be realistic about being parkinsed. I understand that I need to deal with this new reality. 

I'm proud of my academic qualifications, namely, five degrees and a diploma. However, after I retired, these qualifications and the title of "Dr." are not part of my new context of a parkinsed husband, father and grandfather. Facilitating learning in classes of academic staff, both online and contact, is part of an expired reality that is in the past. My new reality is learning how to survive with Parkinson's and without drugs, so let me PRESS THE RESET BUTTON now and get "undepressed". 

Let me share some observations that, upon reflection, make me feel a whole lot better. Some activities have been mentioned in previous posts but let me re-remind myself and you, dear reader. I will start with the video of an exercise song (please turn up the volume) sung by Julien the lemur in the movie Madagascar. His picture is below.

Here's my list of observations involving a range of my activities in which I have 'to move it'.

PHYSICAL ACTIVITY: Walking

As described in post 37, I try to walk outside for at least 10/20 minutes three times a week. Outdoor walking with my caregiver is followed by 20 minutes of stretching indoors. When the weather is poor then I cycle indoors on my mini bike (reviewed in post 19). 

PHYSICAL ACTIVITY: Facial
It's a good idea to do face stretching exercises daily to attempt to counter the standard, expressionless "angry face" worn by those of us with PD. It helps if you are able to do these facing a mirror, preferably while seated. When you start to "feel" you are on the right track you can also do them lying down, with someone watching you if you are prone to choking. Naturally, the number of repetitions will depend on what is manageable. 

I like to start with (1) an exaggerated smile with closed mouth, cheeks pulling upwards, followed by (2) an exaggerated sad face pulling my lips and cheeks downward (not pouting), after which I will (3) puff up my cheeks by filling them with air (lips still closed) and repeating (1) and (2) with air-filled cheeks. Then (4) frown as hard as possible creasing the forehead followed by (5) un-frowning and finally (6) moving both ears backwards and (7) forwards, which can be more difficult than it app'ears'. REPEAT>>   

Then I do few tongue exercises by (8) sticking out my tongue straight ahead without curling the tip, followed by (9) stretching the tongue to the right, to the left, upwards and downwards. REPEAT>>

PHYSICAL ACTIVITY: Stretching

These are standard but the transition time of each set and the time between (1) and (2) as well as (3) and (4) will depend on how much strain is placed on various muscles and how well you cope. 

(1) Both arms are stretched in front of me in line with my shoulders ensuring I look at my hands with outstretched fingers then (2) both arms stretched above my head while tilting my head upwards to look at my hands with outstretched fingers. Then (3) both my arms (hands with outstretched fingers) on either side of my body (right/left arm to my right/left side) till they are parallel to my corresponding shoulders. Then I move my wrists so my hands move first in (4) a clockwise then (5) an anticlockwise direction.   

PHYSICAL ACTIVITY: Hands

The simplest is for me is to (1) stretch both arms out in front of me then (2) at the same time quickly close the fingers of each hand tightly after which I then (3) open both fists quickly by flicking out all fingers on each hand and flexing them simultaneously. This action must be done using as much speed and energy as possible. REPEAT>>

Another is to repeat the above (1) but (2) I slowly move the thumbs inwards so they are touching each palm, then slowly move the second fingers so they cover the uppermost part of the thumb followed by slowly doing the same with the third fingers, ring fingers and pinkies, slowly making a fist. Then slowly reverse the action by moving the pinkies outward and straightened, followed by the ring fingers, third fingers, second fingers and thumbs until both fists are open hands. This action must be done using slow, deliberate movements. REPEAT>>

PHYSICAL ACTIVITY: Feet

In a seated position I straighten the knees and (1) raise both feet out in front of me and off the floor. Then I (2) curl the toes then point and stretch them. I repeat (1) and (2) and then rotate my ankles so my feet move first in (3) a clockwise then (4) an anticlockwise direction.   

MENTAL ACTIVITY:

All my current mental online exercises have been described in post 37 and I'm still enjoying them.  

CUEING: standing & walking from a seated or stationary position

Here I remember the name of a shampoo called "Head & Shoulders" as part of my cueing phrase ("cueing" was covered in post 27). Standing from a seated position is by far the most challenging action for me to complete. Floor covering (carpets, tiles, gravel) is critical as is the kind of chair and its weight. The greater the resistance between the floor and me seated in a chair, the greater my effort and level of anxiety to complete the action of standing up. 

In order to stand from a seated position, I ensure (1) my thighs are as far forward as possible on the seat with my bum at the edge and (2) my feet are as far back under the chair as possible. Then (3) I use the sides or armrest of the chair as a support surface to move myself forward, continuously saying to myself head-over-shoulders then head-over-heels and I initiate the intention to stand. To complete this intended action, before I stand (4) I fixate on a mark/spot/line/pattern on the floor or wall in front of me. This is called "spotting" (covered in post 7 - to assist me with balance when dressing). Often, I stand and walk. 

If I'm stuck then I use the popular emergency exit recommended by occupational therapists, which is to rock forward and backward until I have enough momentum to lift myself up and then initiate "spotting".    

"Cueing" has also become valuable for unfreezing me. When in the shower there are times when my right hand (my right side is the slower side) is unable to reach under my left armpit. So I have to say to my right hand "unfreeze" and without fail, it does! Another instance is when I stand up and turn to walk. My movement is jerky and unsure. I have noticed that, once standing, if I "cue" the right foot to move first and I indicate its direction and then do the same for the left foot, I do not falter in my steps when walking.  

Conclusion

At what stage of PD am I? I can only guess that it's advanced and I'm s-l-o-w-i-n-g down. No sweat, the worst case scenario is...errr...that it's advanced, so, let's keep fighting the good fight, right? 

Oh, you owe me an email before or by the end of November. I look forward to it (even if it's not in English). Till next time, dear reader, I... 

    

(26) PD: who's the boss?

NB (26) above indicates the latest post & numerical order

Recycling my memory?

Years ago, I needed to upgrade the memory of my desktop PC. So, I bought an upgraded module with greater memory and then sold the old one to someone with a similar machine and motherboard: sorted. As a person living with Parkinson's Disease (PD) I wish I could recycle my brain and memory like I did with my PC without having to undergo something invasive, such as deep brain stimulation (DBS). 

If you have read my earlier blog posts you will know that I chose to avoid chronic PD medication since I was diagnosed in 2013. Subsequently, I have focused on alternative approaches and discovered strategies that help my gait, balance and mindset. All of these strategies together with my personal theories, appear in earlier posts. Today I will revisit the idea of retraining my brain. 

Next time, in post 27, I will attempt to unpack neuroplasticity and how this might relate to me and others with PD. (I've included this link by way of preparation as there's a short, explanatory animation).

Train a brain and gain

Srini Pillay wrote a piece in the Harvard Business Review (HBR, June 2017) titled:  The ways your brain manages overload, and how to improve them. To support these 'ways' he reduces the brain's sophisticated roles and functions to that of machines with which we are familiar at home and the office and provides six principles to improve a brain's functions. An excerpt with embedded links follows:

"...the human brain - your brain - is metaphorically endowed with a vacuum cleaner that sucks up information; a container for short-term memory; a blender for integrating information; a memory bank for storing long-term information; a garbage disposal for getting rid of information; and a recycling machine extraordinaire. Using each of these functions effectively is critical if one wants to manage information overload..."

My brain - and yours, dear reader - has learnt to carry out sophisticated, overtly physical tasks such as walking, driving, playing sport, etc. as well as overtly mental tasks such as teaching and learning, constructing theories, completing crosswords, etc. over many years. In fact, since our birth. However, when Parkinson's Disease (PD) hijacked my system it stole my confidence, my ability to move and sometimes my ability to think. In my opinion, my hijacked PD brain is in a constant state of overload! 

I wish to focus on Pillay's (2017) third principle in his article, regarding selective filtering. With reference to one's "placing a filter on the [short-term memory] container", he says that a short-term memory container is like a mug of ideas where space is limited. He suggests we develop a "proactive and reactive" selection of daily information so our mugs are not filled up unnecessarily. 

So, according to Pillay (2017), information selection in a "reactive" manner is when there is "TMI" ("Too much information") resulting in our talking to our brains and telling ourselves to ignore it. I suggest that such talking is similar to the notion of 'cueing' that I have described earlier. As a consequence, a "proactive" selection of information is when we actually engage in "preparing" our brain, laying the foundation, for instance, to ignore "TMI". To illustrate, when we're in a meeting, we can switch off our mobiles or select a "do not disturb" function to selectively remove "TMI" so there's less distraction. 

For the past five years I have been actively composing cues for myself and then consciously executing them when required. I have been laying new foundations for my basic functions of walking and dressing. This "cueing" could be similar to "reactive" information selection. 

Selective filtering: "reactive" info selection

MY BIG QUESTION: Why does existing use of old muscle memory - it's worked for nearly seventy years - make me freeze during a familiar action, such as putting on sandals or getting up from a chair, yet, my reactive response or cueing bypasses the now old muscle memory and I am able to complete those actions? And, remember, I am not taking any PD medication.   

I am aware that driving a car is regarded as part of one's implicit or unconscious memory and represents an action that is not consciously recalled. However, also on this list is dressing and walking. I do not understand how and where my reactive approach has allowed me to bypass the impact of  Parkinson's and make parts of my dressing and walking a conscious recall. I am reasonably confident a neurologist would provide some theoretical answer to clear up my confusion. 

And one possible answer, dear reader,  is the neuroplasticity of my brain. I will ponder this imponderable - like Pinky and the Brain - and attempt a response in the next post. 

For those inclined: finely-tuned brains

Playing a musical instrument is supposed to be the perfect stimulant for those with PD. For the past 5 years PD has reduced me to being a listener. 

My favourite overseas jazz band is an American group called Fourplay. In the link below they perform live in Japan: Fourplay live in Tokyo (2013). Act 1 (the first 35 minutes) is the band playing on their own and is for jazz lovers. Act 11 is them performing for about an hour with the New Japan Philharmonic orchestra, combining classical and jazz. Quite a multitasking accomplishment for the conductor Taizo Takemoto, the Fourplay composers (Bob James, Harvey Mason) and all the musicians. 

Till next time, stay safe.