(61) Hindsight for Foresight (Phase 1)

PHASE 1 - Revisiting Life & Parkinson's

I will spend the next three posts reflecting on (=HINDSIGHT) my new life with Parkinson's, starting from the first sign during 2012 (namely, a quivering thigh), to mid-2013 (my first diagnosis) to January 2023 (started a drug-free Ayurvedic regime) till May 2025, when the presence of my Parkinson's was re-challenged (=FORESIGHT) with a reality check 

I hope you enjoy reading about my thirteen year journey, dear reader, because there's a dramatic outcome!

😔😕😖

It is either speculation &/OR assumption &/OR belief &/OR mere conjecture that Parkinson's Disease (PD) is the result of either genetic or environmental factors or both. Let's unpack this.

Dr James Parkinson spent years observing people with tremors who were shuffling around London streets. His observations were described in detail in his now famous 1817 Essay on the Shaking Palsy, that resulted in European neurologists deciding to name this phenomenon, the "shaking palsy". Then it became known as Parkinson's Disease (PD), also described as People/Persons with Parkinsons (PwP) or just plain Parkinson's. Let's go back to an early Blog Post.

[Extract (✂✂) from Post 24, July 2021]  Historically, ancient health and wellness observations as well as more recent medical contexts, describe PD as a movement disorder and include categories listed below (Goetz, p1):

• 1000 BC:    Indian and Chinese writings describe tremors, bradykinesia and gait;
• 1680:          Sylvius de la Boë writes of rest tremor;
• 1768:          Sauvages writes of festinating (a shuffling walk);
• 1817:          James Parkinson publishes "An essay on the shaking palsy; and then
• 1825-1893: Jean-Martin Charcot recommends this be named Parkinson's Disease.

I was impressed that ancient Indian writing had also identified PD symptoms and had discovered natural remedies using Mucuna-Pruriens, a leguminous plant that contains levodopa. This would have been applied using an Ayurvedic approach.   

But, who was James Parkinson and why is his name associated with the disease?

James Parkinson (1755-1824)

At the age of 29 James Parkinson had qualified as a surgeon in London but it was only when he was 62 that he published his observations regarding the "shaking palsy". In "An Essay on the Shaking Palsy" (1817) and republished in 2002 in a neuropsychiatry journal (link above)...his revelation is that "the disease... has not yet obtained a place in the classification of nosologists;" (p.223), where 'nosology' deals with disease classification.   

Parkinson presents us with his results of six case studies or "clinical vignettes" (Lees, p.843) that describe in varying detail six people observed over a period of time [and]...six case studies of men between 50 and 65 years of age are presented between pp. 225-227 of his essay. Each one noting something with which parkinsed persons can clearly identify. The essay describes varying degrees of stance, gait and tremors...the case presented by James Parkinson was positively received by the medical fraternity, especially by French neurologist Jean-Martin Charcot, who recommended that the 'shaking palsy' ("palsy" being a form of paralysis with involuntary tremors) be named after James Parkinson: hence Parkinson's Disease. ✂✂✂✂

Environmental or Genetic

Regarding the suggestion that PD is either the result of environmental or genetic factors, and based on my own family history, I'm unable to confirm any "genetic" tendency towards my PD. I believe that mine may be "environmental", the result of external factors impacting on my brain and my dopamine production, as suggested below.

1. In 1957, at the age of five, I fell out of a moving vehicle and needed to be hospitalised. My parents told me that the incident resulted in a gash on my skull that required stitches. [=HEAD TRAUMA]
2. For most of my life, I was an enthusiastic DIY person. It started at school where I did carpentry which had me experimenting at home. This included interior refurbishing, i.e. building wooden items, painting and varnishing (1976-2009), painting theatre sets (1973-1980), working with large quantities (often 5 litre containers) of contact adhesive to soundproof rooms (1973-1980), and cleaning my cars' wheel rims with chemical sprays (1990-2017). [=INHALING CHEMICALS]
3. We lost our son, tragically, in 1999 and it led to initial and long term trauma for my wife, my daughter and I. The initial shock was devastating and left us broken in the short-term but we learned over the medium-term to deal with that loss. [=MENTAL TRAUMA]
4. In 2012 an unchanged institutional employment regulation forced me into early retirement from a permanent job at the age of 60. I spent eight months without stable employment resulting in some trauma until I found permanent employment late in 2013. [=MENTAL TRAUMA]
5. In 2012 I also noticed a tremor in my right thigh. That resulted in an MRI and subsequent neurologist's diagnosis in 2013: I had PD!

😔😕😖

Parkinson's, my alternative reality

In my opinion, being parkinsed is a movement disorder mind game and that may be why I chose Hamlet's opening lines of the fourth soliloquy from Shakespeare's Hamlet in my Blog title: Parkinsed: to be or not to be.

"To be, or not to be: that is the question. 

Whether 'tis nobler in the mind to is suffer

The slings and arrows of outrageous fortune, 

Or to take arms against a sea of troubles,

And by opposing end them?"

💡Immediately after the 2013 diagnosis I honestly believed I would be able "to take arms against a sea of troubles" even though it might not be possible to "end them". My approach to being parkinsed was to be on a drug-free regime. Could I reverse the effects of Parkinson's by using my academic ability [BA (Hons), M.A.(Drama), M.Ed.(Computer-Assisted Education) & a D.Ed.]? 

Could I fight PD with a PhD?

At university I was regarded as a practitioner researcher, generating original, personal theories from my actual practice. In this context - I was a professional development specialist, - as facilitator of the professional development of academic staff (2002-2017) at three SA universities, I also challenged staff to rethink their mental capacity and practice as academics. So, why not rethink my attitude towards PD? Below are two examples of my shifting academics' (and my own) practice as well as my attempt to ground myself with handwriting.  

Building Mental Capacity 

I started to have short-term memory lapses in my mid-fifties. I came across colleagues with similar issues and we often talked about the challenges associated with ageing and how it could impact our own teaching and learning. We wondered about using technology to help our tired brains, so, instead of typing maybe we should use "Siri" or "hi Google". However, we all agreed that this could also lead to greater reliance on technology and less reliance on brain power... 

So I decided to try the following technology-free approaches, some of which were work-related and ideal tools to build my mental capacity to wage war on my PD.

MIND MAPS As a professional development specialist (2002-2017), I was a facilitator of teaching, learning and assessment skills for academic staff but in 2009 I shifted my focus. Instead of using a laptop or tablet to record minutes of meetings I used pen and paper-based mind-maps to select main, sub-ideas and details! As secretary of two university committees as well as a professional body off-campus, I had opportunities to practise. By 2010 I had become proficient at this form of note-taking and my confidence may have helped me confront my PD. 

PECHA KUCHA This is a Japanese reductionist technique to reduce a paper's length or introduce new concepts in under seven minutes. A Pecha Kucha limits a presentation to 20 PowerPoint slides each on a timer (20 slides X 20 seconds per slide = 400 seconds per whole presentation) [Pecha Kucha template]. I have presented two conference papers as Pecha Kuchas and Boyer (2013) is available online. It focuses on key points, avoiding detail. In 2014 I was requested to develop a training programme to prepare staff to convert their papers into Pecha Kuchas for an international ICDE conference in 2015.

14 November 2023

HANDWRITING Until my retirement I enjoyed writing by hand and I wonder what impact this had on my confidence: could it have affected my fight with PD? In September 2022 I published Post 36 of my Blog in which I shared thoughts on handedness and some samples of my handwriting. November 2023 I wrote my granddaughters' names on three envelopes (see picture) without ruled lines. I was 71 and had PD!

Conclusion

This is the end of Phase 1. If my story has drawn your attention, dear reader, then I look forward to your accessing Phase 2. Stay well and safe till next time...

The references below were accessed in July 2021.

• Goetz, C.G. (2011) The History of Parkinson's Disease: early Clinical Descriptions and Neurological Therapies. Downloaded from <http://perspectivesinmedicine.cship.org> on July 16 2021. 
• Parkinson, J. (1817) An Essay on the Shaking Palsy. Available at <https://neuro.psychiatryonline.org/doi/pdf/10.1176/jnp.14.2.223>. Link in post above.
• Lees, A. ( 2017) [Lees reviews Parkinsons'] An essay on the shaking palsy.

(60) Blog STATS: 2020-2025

BLOG STATS 2023

In Blog Post 42, April 2023, I reflected briefly on those followers/readers/viewers of my Blog that I named parkinsed.blogspot.com. A summary of that reflection is below followed by another more recent summary of my Blog's stats. 

OBSERVATION 1  There had been 2138 "viewders" (I was unable to distinguish between viewers and readers, so I combined the two) between April 2020 & April 2023. That was the equivalent of 1,069 'viewders' per year. I was pleased, as the Blog name "parkinsed" was not a conventional one such as "Parkinson's Disease". This meant that a 'viewder' would have done a consciously broad search for information regarding this movement disorder to have come across my "parkinsed" Blog site. 

OBSERVATION 2  Readers'/viewers' countries represented in the website's basic analytics are = 1. South Africa (majority), 2. Russia, 3. Europe, then Australia, Canada, India, USA, New Zealand and Indonesia. Naturally my posts were from within a South African context so I had expected the local readership to have constituted the majority of my 'viewdership'. Again, I was pleased. Also, two local organisations (Parkinson's ZA & Movement Disorders Support) had added my Blog site to their websites thereby boosting local interest and my ego, dear reader...      

BLOG STATS May, 2025

It is now two years later, May 2025, and I am going to reflect, again, on this Blog's activity. The current total number since the 2020 launch, is 13,700 'viewders'. 

OBSERVATION 1  So, since April 2023 to May 2025 (the previous average was 1069 'viewders' per year), there have been 11, 562 'viewders' of my site, amounting to an average of 3,854 per year.  This implies the annual number of hits has trebled, and is a very encouraging indication!

OBSERVATION 2  'Viewders' countries represented by numbers during the last 30 days (April/May 2025) = 1. South Africa, 2. USA, 3. Poland, 4. Australia, 5. (rest of) Europe. Then, less than ten from each of the following: 6. Russia, 7. Canada, 8. Zimbabwe, 9. Barbados, 10. New Zealand. I am impressed with the spread of countries as compared to their actual numbers: another encouraging indication. But more interesting is a glimpse of a five year overview indicated below.

BLOG STATS, ALL TIME (Jul 2020 - Jan 2025)

The spread of countries becomes more interesting when looking at a five year overview. The details below were sourced on May 25, 2025 from blogger.com's statistics.

OBSERVATION   The use of "K", below, may be interpreted as one thousand, so 5.02K is 5,020 'viewders'. Again, I am pleased with this overall spread that could indicate a general, worldwide curiosity about Parkinson's Disease because of its growing impact. (The current estimate is that, worldwide, about 12 million people are living with Parkinson's Disease!) This general interest may be followed by, I assume, a specific interest in some of what I have been sharing in my Blog. Hence, I assume that 'viewders' have found it useful to read about many years of personal strategies, tips and tricks of coping with this movement disorder as described in my posts. 

(Till next time, dear reader...oh, and if you're curious, I've updated my profile :-)

Under the heading "TOP LOCATIONS" in Blog Stats, I found the following information, below, for this Blog for the period July 2023 - January 2025. 

South Africa                                                                                                                                

5.02K

Hong Kong

3.94K

Singapore

2K

United States

815

France

324

Germany

275

Austria

191

Australia

141

Finland

122

Russia

114

China

106

United Kingdom

60

Switzerland

52

Canada

49

Poland

40

Netherlands

37

India

35

New Zealand

20

Ireland

15

Other                                                                      410                     410

(59) PD cueing revisited

Connecting dots

In April 2023 (Post 42) I reflected on specific issues, such as spotting, a dance strategy, that was useful when dressing and trying to maintain my balance. By 2025 this has become irrelevant as, sadly, I am presently unable to dress myself. I also made observations on cueing (as well as in Posts 27, 28 and 38) and unpacked the concept (see extract below).

Post 42 (April 2023)"...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." 

In today's post, dear reader, I want to revisit my understanding of cues and introduce prompts.

Prompting for access

The words prompts and cues appear to be synonymous but for us Person/s with Parkinson's (PwP) they are not.

A PwP, like myself, sometimes needs a reminder and to prompt myself to remain aware of hazards when negotiating spaces. An example would be my approaching a narrow space where there is nothing stable to hold onto. What makes my action dangerous is that I have to walk sideways. When I concentrate on balance I prompt myself to be cautious the whole time, for instance, I talk to myself in full sentences: "OK, slowly, watch it now...". Consequently, I feel confident and safer as a result of the prompt. In one such narrow space at home (at my desk/computer) I have fallen twice in two years, so I always prompt myself to be cautious there. Fortunately, I only have to navigate this narrow space when it's blog time. 

Another action requiring a prompt would be when being seated in one of three different chairs in the lounge. There are specific prompts for these chairs, namely, (A) a recliner, (B) a recliner/incliner and (C) a dining chair. Prompts are always required when I walk towards one of these three chairs. I stand still, facing one of them, before prompting myself to slowly turn before carefully moving backwards (the dodgy part) to flop down onto one of them as gently as possible.  

A fourth chair (D) is one that needs to be slid out from under my desk in my bedroom. Then I need to prompt myself to shuffle slowly and carefully sideways into the ±45cm space between the desk and the chair in order to get seated. This is challenging because of the sideways access with nothing to hold onto, like I have in the shower. But, before sitting down in front of my computer, I still have to shuffle forward, my knees bent under the desk, while pulling the chair under my bottom: a potentially hazardous procedure! Oh, and I have a movement disorder, too 😓. 

So, where were cues and prompts first used?  

Well, in the theatre a prompter reminds actors of their lines. Prompters are a critical part of rehearsals as they allow the cast to put down scripts and to focus on acting. When the actual performance is underway, prompters help actors who might panic and forget dialogue.

Specific lines spoken at specific parts of a scene are a reminder of what other actors are supposed to be saying and/or doing at that exact time and these reminders are called cues. Specific lines can also be cues for lighting changes or music or for actors to enter or exit a stage.

PD's cues

Cues used in the context of movement disorders, specifically for PD represent a form of external stimulus generated by the PwP in order to facilitate some form of repeated movement, such as walking. This cue is created to substitute what is absent due to PD and may include rhythmic sounds, music, counting or following patterns/shapes on the floor.

Lim et al. (2005, p.696) cite Cools' definition of cues as "contextual or spatial stimuli which are associated with behaviour to be expected through past experience." For further clarity, Lim et al. (2005, p.696) cite Horstink et al. in order to distinguish between cues and stimuli: "cues give information on how an action should be carried out...more specific than simple stimuli".  

Nieuwboer, (2015) indicates the need for further research into cueing based on the fact that "...gait and balance impairments...in Parkinson's Disease...are not well-controlled by levodopa" while "cueing has an immediate and sustained effect on gait...". One drawback in cueing, is that not everyone who is a PwP has a sense of rhythm to sustain a repeated cue due to their "inflexibility and lack of perceptual rhythmicity..." (Nieuwboer, 2015). This is yet another good reason for us PwP to exercise regularly, right?

My cue to exit...

A constructive way for a PwP to consider cueing is to work with a therapist you trust and then experiment with different modes of cueing. I have found that some therapists have approaches that do not click with me, so do your homework. Check out this easy-to-read link and video of a physiotherapist in Luxembourg which may give you an idea. 

Till next time, dear reader. {Exit, Ari. Fade lights and background music. Cue cast for curtain call.} 

(58) PD support & self-care: a global snapshot

Worldwide support for PD

Parkinson's Disease (PD) has had a crippling effect on millions of people all over the world, as is evident by the range of organisational support available internationally. According to my recent Google search (Feb/Mar 2025), such support is offered by dozens of countries online and these are listed in random order below. (Indeed, we are not alone!)

🌍🌏🌎

• Parkinson's Foundation 
• World Health Organisation
• Parkinsons International
• World Parkinson's Program ('free' medication)
• Parkinson's ZA (South Africa)
• Movement Disorders South Africa
• The MJ Fox Foundation for Parkinson's Research (PD funding & advocacy)
• Parkinson's UK
• American Parkinson Disease Association
• Parkinson Canada
• World Parkinson Coalition (International Forum for PD)
• International Parkinson and Movement Disorder Society (IPMDS)
• Parkinson's Ireland
• Parkinson's Australia
• Parkinson's New Zealand
• Parkinson's Europe
• IPMDS: Asian and Oceanian Section
• Movement Disorders Society of India
• Malaysian Parkinson's Disease Association
• Parkinson Society Singapore
• Africa Parkinson's Disease Foundation (Kenya)
• The Danish Parkinson's Association
• The Swedish Parkinson's Foundation
• The Norwegian Centre for Movement Disorders
• Parkinson's in Greenland
• Friends of Parkinson's UAE (United Arab Emirates)
• The Finnish Parkinson Foundation
• Pakistan Parkinson's Society
• Parkinson's Association Israel
• Korean Parkinson's Disease Association
• Hong Kong Parkinson's Disease Foundation

OBSERVATION The PD-support sites listed above are what appeared in a Google search. It's a fair representation of countries that are actively engaged in assisting their citizens. However, some - such as Russia, Ukraine, China, Turkiye and South America - are not transparent online about their approach to supporting their citizens who have PD. Curiously, within each of these country searches, Google also showed published research results with significant numbers of PwP in these five areas! Also, I have not included dormant, PD-support websites that exist online but have been unpopulated for years.

     

Help for me, a PwP

As a Person with Parkinson's Disease (PwP) since 2012, I have been able to identify three main sources of support to whom I have always turned for help. Allow me to share these:

• Myself ("What should I do?") as I generally trust my instinct;
• The Internet ("Why/what is happening?") as a broad spectrum source of info and evidence; and
• Other People (medical specialists, therapists, Parkinson's Support Groups, caregivers, etc.) for their expert advice and care.

According to Michael J. Fox, in the context of PD, "the people living with the conditions are the experts". As a Person with Parkinson's (PwP) and diagnosed in 2013, I agree with his statement. This does not mean that neurologists (I've been diagnosed by three) don't have a role to play in PD management. In my experience, their diagnoses are likely to be based on their experience of medical science, psychology and pharmaceutics, etc. and not necessarily based on listening to the experience of 'the people living with the conditions'. This leads to the focus area of this Blogpost: what is self-care of PD? 

Self-care of Parkinson's: a brief overview of research

The Swedish National Parkinson School

A research project involving PwP, undertaken by Hellqvist et. al., entitled "Self-Management Education for Persons with Parkinson's Disease and their Care Partners..." (2020), examined the types of guidance provided by "healthcare services in order to develop skills to adjust to life with a long-term condition."

It was discovered that "after seven weeks of standard care" offered by those health care professionals there were "improvements regarding health status, constructive attitudes and approaches, and skill and technique acquisition" among the PwP but not among the carers. So, with 'standard care' the Swedish National Parkinson School is able to improve the self-management and health status of PwP. 

They describe self-management as practicing "activities that individuals initiate and perform [to maintain] life, health and well-being." How does this compare to the other perspectives, dear reader?

Parkinson's UK

Since 2013, Parkinson’s UK has been facilitating a self-management programme called A path through Parkinson’s as reported in Parkinson's UK Self-Management Programme Evaluation Report (2017). Together with PwP the programme allowed participants to share experiences and then to unpack "practical and emotional impacts [of PD during] discussion, activity and self-reflection delivered over three or six consecutive weeks, building up to a final session of action planning..."

Many participants experienced the following as some of the general outcomes of this programme: 

• "feelings of increased confidence, resolve, positivity and control"; 
• "feeling more connected and less alone"; 
• "feeling armed with information and knowledge";
• "an understanding of the value of planning and taking action for the future"; and 
• "feeling able to create a personal action plan for things such as exercise, dance [etc.]."

Parkinson's Disease and finding time to practice self-care

According to Sarah Vevers in What to know about Parkinson's Disease self-care (2023) there are at least ten, common-sense ways to practice self-care when one is a PwP. She believes that it is important for PwP to "prioritize self-care for their physical and mental health". Here is her list.

• Exercise (aerobic, strength, balance and stretching)
• Socialising (social ties = brain health)
• Healthy Diet (variety + calcium/vitamin D)
• Hobbies (more self-care & less stress)
• Yoga and Meditation (= wellness, stress, emotional health and sleep)
• Staying independent (occupational therapy)
• Massage Therapy (= motor & non-motor symptoms)
• Learn about the condition (PD)
• Join a Support Group
• Self-care for Carers

Mobile health intervention for self-management...in PwP (South Korea)

Park, et.al., in their research project Effect of mobile health intervention for self-management on self-efficacy...in people with Parkinson's Disease...(2022), used "mobile applications, smartwatches, smartphone-based short text messages and information, and telephone counselling..." with a small group of PwP who were outpatients at a university hospital clinic. 

"After 16 weeks, self-efficacy and non-motor symptom scores in the intervention group significantly improved compared to those in the control group. However, no significant differences were observed in the motor symptoms, self-management, and quality of life between the groups." It was concluded that the "mobile health intervention for self-management is effective for self-efficacy and non-motor symptoms in people with Parkinson's disease." 

So, watches and smartphones could have a positive effect on how PwP manage their medication intake, their exercise, their social life and gather information but has little or no effect on their motor symptoms.

Practical PD self-care handout

This easy-to-read and beautifully illustrated handout, You're diagnosed with Parkinson's Disease - Self Management is a handy resource for any PwP. The following sections contain useful advice:

• Medicine;
• Balance;
• Walking; and
• Standing.

This seven-page handout is worth printing.

6 Medication-Free Ways To Feel Better With Parkinson's Disease

The Parkinson's Disease and Movement Disorders Center at Johns Hopkins Hospital in the USA also have a useful resource called 6 Medication-Free Ways To Feel Better... Its focus is on the following integrative therapies:

• ?Nutritional Supplements?; 
• Tai Chi;
• Yoga;
• Massage Therapy;
• Movement Therapies; and
• Acupuncture.   

Concluding thought...

Self-care and my self-management should not taken for granted when one is a PwP. I rely on both my wife and my caregiver to help with the care and that generates elements of self-management on my part.

After living with PD since at least 2012, I have begun to regard Parkinson's as my accompanied or cabin baggage that is always with me, because:

It is a permanent reminder of my limitations as a PwP;
It is a burden that I will bear for life;
It is always packed and ready to go;
It is lightweight and waterproof;
There is no charge for it when I check in to travel; and 
It is accepted by all modes of transportation.

Till next time, dear reader...

(57) PD: staying in tune 😊

Dopamine & my happy triggers

A recent article on what are regarded as "feel-good transmitters*" by Watson (2024) entitled Dopamine: The pathway to pleasure is an informative, easy-to-read piece of writing, particularly for us People with Parkinson's (PwP). It touches what is at the heart of today's post, namely, what makes me happy! But first, dear reader, some context so we can all connect the dots.  [*NB Besides dopamine, there are three other feel-good transmitters: serotonin, endorphins and oxytocins.]

According to Watson, dopamine also helps us "...feel pleasure as part of the brain's reward system. Sex, shopping, smelling cookies baking in the oven — all these things can trigger dopamine release...[and] this feel-good neurotransmitter is also involved in reinforcement [so] once we try one of those cookies, we might come back for another one (or two, or three). The darker side of dopamine is the intense feeling of reward people feel when they take drugs, such as heroin or cocaine...". Dopamine shortage in PwP has been covered in previous posts so I shan't repeat the obvious. Sadly, in my present parkinsed life, the 'sex' and 'shopping' are absent but other pleasure factors that are still alive and well are music and photographs and my family. 

Music

I learnt to play the piano and to read music when I was at high school - more than 50 years ago - during which time I also spent four years as a drummer in a band. After I left high school I discovered the joy being able to play by ear - i.e. without sheet music - and that ability has given me much happiness on my own. Unfortunately, during the last few years, my right hand has become inactive and stiff resulting in my not being able to play my electronic keyboard with both hands. So, what are alternative happy triggers?

 

Five years ago I bought a versatile and compact music centre (similar to the one in the pic) which has a record/vinyl player, cassette player, CD player, bluetooth capability as well as a FM radio. The sound quality is not great but quite acceptable.  

Naturally, I still have collections of long-playing records (LPs/Vinyls), audio-cassettes as well as compact discs (CDs). They range from rock to R&B to classical/orchestral to jazz to blues, from South Africa and from the rest of the world. Now that I am unable to play my keyboard, my wife regularly plays these CDs, LPs or cassettes. 

Music brings me much joy and warmth and always, temporarily, counters the Parkinson's zone which often engulfs me. Music can be powerful, and an equivalent of an over-the-counter drug! 

BREAKFAST I used to start every weekday by watching TV news for at least 90 minutes while having breakfast. My wife observed that, too often, the news would be depressing and cause me to become moody. So, two years ago, I changed my habit to starting my day and breakfast with one of many DMX music channels available on DSTV (cable TV). I start my weekday with an hour of DMX "Beautiful Instrumentals" (DSTV channel 784) or "Contemporary Instrumentals"(DSTV channel 785). Besides starting my day on the right note :-), I now recognise subtle differences in artists' signature styles, e.g. between pianists Richard Clayderman and Floyd Cramer. 

GENERAL Over weekends we tune into LM Radio (DSTV channel 821) historically one of the older Southern African music radio stations now also available online and broadcasting from Gauteng. Their focus, seven days a week is exclusively music from the 1960s-1990s. I am always happy when listening to familiar sounds of Tom Jones, Engelbert Humperdinck, Cliff Richard, Santana, Herb Alpert, The Beatles, Herman's Hermits, The Flames, The Dealians, etc.  

During the afternoons and some evenings, I listen to a local Kwazulu-Natal music radio station called East Coast Radio (DSTV channel 836) that plays mainly contemporary pop. While cycling, I generally listen to "Smooth Jazz" (DSTV channel 785). 

INTERPRETATIONS Whilst at high school, a friend came across a rock band called Emerson, Lake & Palmer (ELP). Around 1971 they released an album of a live concert called Pictures at an Exhibition and we - a group of five - were hooked. We listened to it over weekends for months and knew each of the ten pictures and accompanying tunes quite well. 

A few years later - long before the internet - I stumbled across Russian music composers one of whom was Modest Mussorgsky and discovered that he was the original composer of a piano suite describing an exhibition of ten of Viktor Hartmann's original Pictures at an exhibition. ELP rose in my esteem!

Recently, when searching for background music I came across a piece called The Hall of the Mountain King by Grieg which was familiar to my ear. I wondered if there had been a modern interpretation of it and sure enough, Apocaliptica had a rock version of The Hall of the Mountain King. Such interpretations will allow for a greater audience appreciation of music, both classical and contemporary. You too, dear reader, should keep an eye and ear open for such examples as those two above. 

JAZZ And I would like to share another example of how musicians are able to reshape their craft. I am a jazz lover and a huge fan of American quartet Fourplay. At least two of the band members - pianist Bob James and bassist Nathan East - have also produced a few solo albums. I was fortunate to have seen them live in South Africa. I was even more impressed when I came across their 2013 Live in Tokyo concert performing by themselves (Act I) for the first 34 minutes. Then (Act II) they performed with the New Japan Philharmonic which included some original compositions. They are truly creative craftsmen. 

Conclusion

I still have a few DVDs of music concerts that are my all-time favourites: Celine Dion live in Las Vegas; Santana Supernatural live; The Shadows - The Final Tour. And if you are/were a Cliff Richard & The Shadows fan here is a link to their Final Reunion 2009.

We PwP, as regularly and as often as possible, need to remind ourselves to be happy. Keep the dopamine flowing. And I will continue to listen to music every day. Till next time, dear reader: HaPpY HoLiDaYs.

😀When you pass a mirror, look into it & smile!😀

😀When you pass a mirror, look into it & smile!😀

😀When you pass a mirror, look into it & smile!😀

😀When you pass a mirror, look into it & smile!😀

(56) PD & my "instinct"?

"Instinct" amended?

(I'm thinking of "instinct" as being = a natural tendency.)

Before 2013, the year of being diagnosed as a Person with Parkinson's (PwP), I was right-handed and never thought about telling my hands or arms how or when to move. But after becoming a PwP I have become left-handed so I've had to relearn a lot of basic hand movements. I've also had to instruct my legs on what I need them to do via the constant use of *internal cues (*see Post 42) to relearn how to walk, to turn 45° or 90°, including raising my hands/arms or legs/feet because Parkinson's Disease (PD) has made me unlearn how to move "instinctively". Also, there are different types of cues.

The natural tendencies I had relied on "instinctively" pre-2013 have been gradually amended by my PD! Similar, man-made amendments have been noted in the animal kingdom, dear reader.

It was observed in the USA that, after hatching - pic (right) shows a turtle hatchling's tiny size relative to an adult - baby turtles on a Miami beach crawled towards the nearby housing complexes and not into the sea. A similar scenario was recorded by a Planet Earth II film crew in Barbados. Normally, the beach hatchlings move instinctively towards moonlight in order to reach the sea. However, the bright, artificial lights of beachfront residences disorient the hatchlings and, tragically, they move towards beachfront lights rather than towards the moonlit sea. As a result, they are often crushed by vehicle tyres or stuck in drains. Consequently, many sensitised beachfront property owners now use softer lighting to prevent such misdirection and hatchling deaths.  

In the context of the tiny baby turtles' instinct being amended or misdirected, here are two personal "snoitcelfer" (see Post 54).

                          

QUESTION A: If PD has *amended [*altered to reflect changed circumstances] what I used to do instinctively, then should I accept this situation and be defined by it? 

ANSWER: Maybe not!

QUESTION B: Can I *amend my PD effects [*alter to reflect changed circumstances] and replace an instinct by consciously visualising an action, and then trying to perform that action via the following: 

(1) purposeful, internal/external cueing; and

(2) overriding my muscle memory; using 

(3) a feedforward response.

ANSWER: Yes, often!

Question A is self-explanatory in my context, but Question B requires some unpacking.

Amending my PD?

Question B above is my way of exploring the impact of PD on my motor learning challenges, a major part of being parkinsed! (Sigh...)

• 1. cueing: (SEE DETAILED Post 17: Nov 2021) As a PwP, I use the technique of cueing (used by athletes to fine-tune actions by addressing micro-movements of their limbs) to address my faltering movement. But this requires me to isolate specific actions and then to break them down into micro-movements. Only then can I assign specific words or phrases - all regarded as cues - to initiate and to execute these actions. Internal cueing, for example, would be saying "heel-toe" silently in my head to support my walking action. External cueing, for example, for me to cycle according to a rhythm or speed governed by music or a metronome. I can also engage in advanced cueing where a phrase becomes converted to numbers or a tune with which I am familiar. {NOTE Internal cues are effective when I need to initiate and sustain repetitive movement (e.g., walking or cycling) but only partially helpful if I freeze. To move legs during a freezing moment, I have to (i) distract myself by introducing a new, "wipe-clean thought", especially a silly, nonsensical one or/and (ii) shift my weight from one foot to another and then move with a cue. To move hands during freezing moments, either I look at their reflection (tiles/mirror/glass) or look away from my hands and carry out the action, with a cue.} 
• 2. muscle memory override: (SEE DETAILED Post 6: Apr 2020) I have discovered that my muscle memory appears to be guided, as well as triggered, by what my eyes are looking at during the start of a specific action. If I need to wear sandals, looking at a sandal and then my foot, seems to trigger a specific muscle memory response of how to put it on. This may be regarded as the 'previous normal' before PD, now, has caused a freezing or blocking of such a simple action.  However, I found a corrective measure for many muscle memory driven blockages in PwP, is to repeat that action but with my eyes physically closed. With regular practice, I have found my 'new normal'. I had to close my eyes in order to open my mind to new possibilities :-).     
• 3. feedforward response: while feedback is focused on analysis of the past, on mistakes and on what went wrong, I have probably been using feedforward responses to focus on analysing the present (including cueing and muscle memory issues) to find solutions to my movement disorder rather than delve into problems: essentially, how to do things better in the future. Also, a successful action generates an expectation on which I can provide myself with useful insight without being critical.  

Amended learning?

Olson, Lockhart & Lieberman (2019), in their article Motor Learning Deficits in Parkinson's Disease, state that in the context of PwP, "While individuals with PD are able to learn, certain aspects of learning, especially automatic responses to feedback, are faulty, resulting in a reliance on feedforward systems of movement learning and control." This is a useful, dense, academic piece of writing that compares and contrasts large numbers of completed research projects involving PwP and their movements. The article is thorough in its examination of gait freezing and postural instability in PwP and cites effects of a wide range of physical therapies from just walking or using treadmills to gaming consoles such as Wii Fit and XBox. 

A focal point of the article is on motor learning and its impact on the explicit learning (an active and conscious process where I would gather info via research and study of others' work) and implicit learning (a passive unconscious process of gathering info from what is learnt and observed via my experience and practice) of PwP. In my honest opinion, I have managed, regularly, to amend the total onslaught of Parkinson's Disease on me by flirting with both modes of learning. So, my own feedback responses as a PwP are not really "faulty"... 

My dilemma is that the above authors note that "PD is known to cause apathy...[leading] to a reduced tendency to evaluate and monitor outcomes and negatively impacts feedback-learning." My solution to the negative presence of muscle memory and how to override it, is based on weeks of simply observing and thinking about the problem of being unable to put on a sandal before my moment of accidental discovery.  

I believe most of my strategies to amend my PD and my reporting on these in my Blog posts since 2020 may be a healthy mix of explicit and implicit learning. What do you think, dear reader?

An important issue negating the "apathy" cited may be the fact that I am PD-drug-free! Also, Google does suggest closing one's eyes to change muscle memory but in the context of athletes and not PD. So, there!   

Conclusion

In line with the general structure of my Blog posts I write and present info in a provocative yet simple manner based on my personal observations. I share info as a PwP that is subjective and not generalisable but maybe it will be of some use to some PwP somewhere. Hopefully, some of Post 56 and my explanation of amendments has been useful for you, dear reader, rather than a misdirection. Till next time...