(69) PD: HAVING A QUALITY OF W.H.A.T.?

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👀 BLOG STATS, 31 October 2026

In the three-month period between early-August 2026 (the publishing of the last one, Post 68) and the publishing of this one (Post 69) end-October 2026, a total of 10,800 viewders visited random posts on my Blog site. As I don't know whether the visitor has just viewed it or read it, I'm using the term "viewders".  

During this Blog's existence (i.e. 2020-2026), there have been an all-time total of 40,395 viewders! I'm so impressed with this interest in Parkinson's and in my posts and really encouraged by this growing interest, especially by viewders in the USA. 

The top six countries that have visited this Blog site over a three-month period during August-October 2026, comprising a total of 5,312 viewders, are as follows:

USA (1,620);

Singapore (889);

Brazil (888);

South Africa (752);

Vietnam (636); and

Germany (527)

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PERSONAL EXCUSE😒

Dear reader, the delay in publishing this latest Blog, post 69, was because I've been experiencing niggling pains around my left knee, and it's been uncomfortable to sit at my computer. Upon reflection (including an opinion offered by ZP, the biokineticist), I believe my aching left knee, which is especially sore when I bend it, could be due to the following:

• Being seated in the same position for long periods on a dining chair during the day. ZP has advised me to raise the height of my left foot, so I'm currently resting the left foot on a polystyrene block (see pic, right) when I'm seated = it appears to be helping;

• Cycling for too long on my stationary cycle so, my sore knee is being aggravated by the cycling action = I've reduced my cycling time and it has helped; I've also started wearing a patella strap when needed); and

• The impact of Parkinson's, specifically my changed gait, which includes shuffling (i.e. festination) and slight stooping, is likely to lead to musculoskeletal changes = that apparently will have an effect on my knees. 

IN THE BEGINNING...

After being diagnosed with Parkinson's Disease (PD) in 2013, I spent many years figuring out how "to cope with the impact of this degenerative disease". I soon discovered that I was dealing with an invasive disorder that had slowly hijacked me, especially the "natural" movement in my legs and arms such as walking and stretching. I grew "gatvol" (English = "fedup") of merely "coping" with life so, in March 2020, I launched a Blog called "Parkinson's: to be or not to be". The reason for the choice of title is in Post 1 (<-click to open) and located at <Parkinsed.blogspot.com>. 

QUALITY OF "LIFE"

This Blog is my go-to place and a platform upon which to reflect on the quality of WTF/ Life/Whatever, and whether "to be or not to be parkinsed". People/a person with Parkinson's (PwP) are/is informed by the NHS UK, that they'll only be able to maintain a decent quality of life, (*I've added 2 items), as long as there're research-based, proven remedies. Naturally, we'll also need a medical insurance plan for these "proven remedies". Below is a useful list.

• *Specialist advice (General Neurologist &/or a Movement Disorder Specialist); and possible
• Surgery. Then, 
• Therapy (regular Physiotherapy, Occupational Therapy, Speech & Language Therapy);
• *Support group meetings;
• Exercise (Walking, Cycling, Boxing, Swimming, Balance, etc.);
• Diet (dietary treatment/advice);
• PD Medication (Levodopa; Dopamine Agonists; monoamine oxidase-B inhibitors); and
• Other Medication (for constipation, depression, pain, irregular blood pressure, weight loss, sleep disorders, memory issues, etc.).

In my opinion, this bulleted list above represents possible interventions that a newly diagnosed PwP needs in order to maintain a decent "quality of life". One's 'quality of life', will also be influenced by (i) whether one's in an urban or rural area, as that would determine the kind of specialist practitioners available (i.e. either a Neurologist or a Movement Disorder Specialist). In addition one would be (ii) categorised as either displaying early-onset or advanced stage Parkinson's. 

But, simultaneously, one can also opt for home-grown treatment and seek out (i) alternative approaches by doing extensive research and by reading (e.g. the latest Fox Foundation funded gizmos, or repurposed arm/leg weights that will counter the Parkinson's foot drag, etc.). You can also consider (ii) personal habits that keep you happy, (the equivalent of "comfort food" sans calories :-), such as your favourite sport (can you play it in your area), treasured music (e.g. buy a turntable/CD player), indoor games (e.g. ping pong), and so forth. I have tried all these and they work and they DO make me happy! I wrote about my "happy triggers" in Post 57 (<- click to open).

It is critical to contact a medical practitioner with specialist knowledge so you're not misdiagnosed. You could also access a Parkinson's support group so you're not overwhelmed by your diagnosis! When I was diagnosed in 2013 I was sixty, living and working in a well-resourced city in Gauteng so I was able to access resources and find good support, including a Dance for Parkinson's class. I retired from work in 2017 and moved to KwaZulu-Natal (KZN) in 2020 where I reassessed being parkinsed. I revisited my diagnosis as I adjusted to a new city and searched for new support: & my Blog was born! A PwP support group, Parkinson's ZA, was established a few years ago in Durban and it became my weekly happy place.

EXPERIMENTING WITH "HAPPY"

My Blog was launched in March 2020, shortly after I started weekly photobiomodulation therapy at the Durban Neurolaser Clinic. It was my first attempt at a novel intervention and I was excited about the prospect of my PD easing. In my opinion, this therapy - years before I tried an Ayurvedic regime or Parkinson's drugs - cleared my brain fog and reversed the apathy I'd experienced since retirement in December 2017. It's likely that academic inactivity - in addition to the general impact of PD - could also have resulted in my general apathy. Sigh!  

So, dear reader, in 2020, after seven years of "coping" and observing this mother-jacker, I decided that expressing my opinion of Parkinson's Disease (PD) should count for something. After seven years I should have developed an informed if not an expert opinion. I toyed with ideas for a series of Blog posts based on being "parkinsed", a word that does not exist but I made up (and this creation makes me happy). 

I reasoned that as I'd enjoyed playing with language (puns/inferences), manipulating words (pictograms) or any other language silliness that put a smile on my face, I should engage with structured writing as I had done throughout my life and my career. So, publishing a Blog would achieve the following: (i) share what interests me; (ii) describe the mother-jacker I'd observed first-hand since 2013; & (iii) write about it. And maybe, just maybe, I'd smile again, as an expert...

My 'language silliness' was encouraged to take root during my childhood by listening regularly to a weekly radio programme called The Goon Show (courtesy of the BBC) that featured a multitude of characters created by the expert Goon Show trio, from left to right in the picture: Spike Milligan, Peter Sellers & Harry Secombe. [Here's a Goon Show sound track for readers who might not've heard Goon humour before.] Later, I discovered Spike Milligan was equally adept at writing, as shown in his printed work, e.g. "Adolph Hitler: my part in his Downfall"and "Puckoon" both of which impressed me.

Michael J. Fox also had an opinion about experts regarding PD, and I agree with him. In Blog post 58 (<- click to access it) I expressed the following: 

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'.

FOUR HAPPY HORMONES

In the context of 'language silliness', being happy does not cure PD but it does allow for temporary improvement of motor symptoms and the general quality of my Parkinson's. Let's briefly visit the fascinating world of the more than 50 hormones in the body by isolating the Four Happy Hormones.

"...the key elements for this is that our positive connections and experiences of awe and wonder actually create a chemical reaction in our brain. This is via chemical messengers in our brains, more commonly known as hormones. There are four main hormones that are primarily responsible for creating those feel-good emotions and sensations. They moderate our feelings of well-being and are influenced by our stress levels, self-care, and lifestyle choices."

The four Happy Hormones, graphic and info courtesy of Parkinson's NSW, Australia, are:

• Dopamine (the "reward" chemical);
• Oxytocin (the "love" hormone);
• Serotonin (the "mood" stabiliser); and
• Endorphin (the "pain" killer).

At least one hormone above will be familiar to you, dear reader. If you're keen to dig deeper into Oxytocin, Serotonin & Endorphin, I'll leave that up to you...

IN THE BLOGGING...

In the very early Posts I presented the reader with my rationale and context for the name, context, etc. But in Post 3 (<- click to open) where I reviewed the Robin Williams movie called "Awakenings" about a hospital where they experimented with PD medication, I started to develop a critical edge. This "critical edge" continued in Post 4 (<- click to open), where I reviewed a surgical procedure to treat PD, the Phase 1 "GDNF Trial in the UK". It involved a few dozen participants committing to participate in a PD drug trial and a possible PD cure. That is when I realised I had found my niche: critical reviews! The GDNF trial was a good news PD story with, IMHO, a horrific result. The desired outcome was not achieved so sponsors pulled their funding leaving a number of PD sufferers without a PD cure and holes in their skulls.

[Courtesy of Google, accessed 09 October 2026] "The 2018 GDNF clinical trial (formally published in early 2019) was a landmark Phase II study that evaluated the efficacy of Glial Cell Line-Derived Neurotrophic Factor (GDNF) for reversing the progression of Parkinson's disease. Funded heavily by Parkinson's UK and Cure Parkinson's, the trial took place at Southmead Hospital in Bristol, UK.

Because GDNF is a large protein that cannot cross the blood-brain barrier, participants underwent robot-assisted neurosurgery to implant four microcatheters deep into the putamen—the region of the brain responsible for movement. GDNF or a placebo was then delivered directly to the brain cells every 4 weeks via a specialized mechanical port behind the ear using convection-enhanced delivery (CED)."  (A REPORT ON THE GDNF TRIAL PHASE.)

And so my blogging began and six years and 69 posts later, it is still being read. The Blog Stats above will bear me out: since the launch in 2020, more than 40,000 viewders have visited my Blog :-).

HAPPPY STUFF PRE-BLOGGING

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 was proficient at this form of note-taking and my confidence may have helped me confront my PD. 

PECHA KUCHAS

In Higher Education, there were, occasionally, opportunities to get involved in fun projects that would make me happy. In 2015 our academic staff were requested to present papers at an international ICDE conference (in Sun City, South Africa) using the Pecha Kucha format. 

"A PechaKucha presentation is a fast-paced, concise storytelling format where a speaker shows 20 slides that automatically advance every 20 seconds, lasting exactly 6 minutes and 40 seconds."

It is a roller-coaster experience that requires your paper to have a precise structure, i.e. a conscious, structured relationship between each slide's text and graphics. That allows you to convey a normal 30-40 minute presentation and sell your idea/concept to your audience in under seven minutes. 

I prepared 25 Lecturers at the Pretoria campus, a month before the conference, and they converted conventional papers into Pecha Kuchas. Their presentations were good based on the audience attendance and reviews. Two Lecturers prepared their Pecha Kuchas on their own but came to me the day before their presentations at the Conference to seek help. Their Pecha Kucha's needed to be constructed from scratch. We managed to do so at the last minute.   

PICTOGRAMS

This format has always fascinated me because it develops as something organic and the concept is unique and personal. 

This is my response to the Madlanga Commission of Enquiry in South Africa, and is an example of me finding my happy place with pencils.

 

  

CONCLUDING THOUGHTS

I have Parkinson's. I have had it for 14 years. It has been 13 years since my diagnosis. I have tried alternative remedies and approaches and they generally work - if your mind can wrap itself around that "home-grown remedy". In May 2025 I started a Parkinson's-drug regime. It has had great results. 

I have had a good life. I have no idea what is meant by "quality of life" in the context of PD. But I do understand how to deal with being a PwP while on a four-times daily Parkinson's drug and an extended release drug overnight. I am grateful for having the advice and treatment by a Movement Disorder Specialist (ProfVP) as well as a GP (DrRSP). They are knowledgeable and caring. As is my wife and my carer.

If I am not happy at least once a day, I die a little inside. 

Good Luck with your life, dear reader!

USEFUL READS

A couple of memorable writings are the following by mostly well-known personalities - each have made a difference in my life!:

• BRANDON BAYS: The Journey: a practical guide to healing your life and...(2012)
• JOE DISPENZA: You are the Placebo: Making your Mind Matter (2014)
• JOHN CLEESE: So Anyway (2014)
• MICHAEL CANE: Blowing the Bloody Doors Off...And Other Lessons in Life (2018)
• MICHAEL J. FOX: No Time Like the Future (2020) 
• BILLY CONNOLLY: Windswept and interesting...My autobiography (2021)

(68) dESTINATION dOPAMINE

BLOG STATS, JULY 2026

It's good to reconnect with you again, dear reader, after a three-month break. In order to get my mental and physical functions up to speed, and in keeping with Post 67, I've decided to sort of "review" myself. But first, a Blog post update.

In the roughly three-month period between end-April 2026 (the publishing date of Post 67)  and 01 August 2026, a total of 2,310 viewders visited my Blog. I assume the April-July 2026 viewders read my review of Miller Caldwell's compilation of Parkinson's Stories. 

And in the 6 years of publishing, I've had a grand total of 29,642 visitors! I am really pleased with this interest, and bearing in mind that I don't know whether the visitor has just viewed it or read it, I'll use the term "viewders". 

The top six countries that visited my book review comprising 2,310 visitors over a three month period, are as follows:

1. USA;
2. Vietnam;
3. Germany; 
4. Singapore;
5. Hong Kong; and
6. South Africa.

Now, back to this "review" of myself.

MY HEALTH ISSUES

Managing to publish Post 68 (the one that you're reading now) in July 2026 is a significant accomplishment for me. Let me explain.

Firstly, my Parkinson's Disease (PD) ran rampant during the first half of 2026, resulting in my wife having to assist me a few times every night for a few months. Secondly, I've been dealing with prostate cancer (PC) and have had therapy in 2025 and I'm currently undergoing further treatment. I've had to clear the PC and the PD hurdles, concurrently. Therefore, in this post, by way of a catchup, I am going to "review" the state of my health from 2005. 

PD CHALLENGES & ADAPTATION: 2013 ➙

This is a brief history of my PD. 

I was diagnosed with Parkinson's in 2013 by a neurologist DrK in Pretoria, Gauteng Province. I decided, then, not to use his recommended prescription but to seek out as many alternative approaches as I could find, be it physical, mental or chemical. 

My thought was: Could I bypass use of a pharmaceutical drug (with published, accompanying side-effects) and replace it with something else? In my teaching and research throughout my career (1977-2017), I had always sought out and found alternative solutions to most problems confronting me. I described this swashbuckling approach in Post 50, Part 1 (<-click to access that Post), where I wondered if I could find ways to challenge PD through a deep dive into literature, anecdotes and research:

"...I was a "practitioner researcher", generating personal theory from my actual practice (my PhD has this evidence). Could I challenge PD with a PhD? Could I, as a practitioner researcher, eventually generate personal theories based on my own observations of PD?"

      

For instance, Parkinson's started with "asymmetric onset" (i.e. only one side of my body was initially affected). As it had affected my right side, I was not swinging my right arm or moving my right leg smoothly resulting in colleagues asking if I had gout or had had a stroke 😖. Gradually, I noticed other debilitating issues and these forcibly channelled my creative thinking into finding solutions and/or adaptations that worked for me, and some of these are below.

• My right leg was dragging so, at work, I regularly wore a wrist weight on my right ankle (conveniently concealed under my long pants) to remind me to lift my right leg when walking;
• I was unable to slip on sandals/slippers onto my right foot but if I shut my eyes then my foot would slide in (was I bypassing the "old" muscle memory?);
• I was born right-handed but my left hand became the new dominant hand: for brushing teeth, for washing dishes, for washing the car and for holding the steering wheel while driving, etc.; 
• My right arm stopped swinging so, at work, I started wearing my watch on my right wrist (not the left) to remind me, consciously, to swing that arm when walking; and
• My right hand was unable to move my computer mouse so, gradually, I learnt to move it skilfully with my left hand.

What is fascinating is the notion of "neuroplasticity" (and "guided plasticity") (Rosén, Wijk & Björkman, 2026) to explain my shifting dexterity as a result of the Parkinson's: 

"Normal hand function relies on a finely tuned interaction between the sensory and motor systems within the central and peripheral nervous systems. The central nervous system continuously adapts to changed activity, environmental changes, learning, and injury — a phenomenon known as neuroplasticity. The neuroplasticity is a life-long ability and presents opportunities for therapeutic intervention; by directing it, lost or impaired functions can be improved through a process called "guided plasticity"."

Even more fascinating is that till today, I am still using my right hand to write and to draw and, yes, there's a body of research to explain that too. Apparently "Handwriting is a complex, overlearned motor program managed by distributed networks in the motor cortex, cerebellum, and parietal lobes, transforming abstract thoughts into fluid physical symbols", so handwriting rules! (HA!!! PARKINSON'S DIDN'T STAND A FLIPPEN CHANCE 😄...)

COMPLEMENTARY SUPPORT FOR PD: 2020 ➙

By 2020 I had started to engage with the following, below, after much reading and thought. Seeing that I was still in alternative survival mode, that included any and every possible supplementary approach to continue the fight against being parkinsed, I cast my net wide.

1. Photobiomodulation: in December 2019 a relative referred me to to a Carte Blanche documentary on television during which they had interviewed people who had had low level laser therapy sessions to alleviate movement disorder issues. Unfortunately neurologist Dr Bhanjan at the Durban Neurolaser Clinic was the only practitioner in South Africa so the earliest appointment I could get was in late in 2020. However, by March 2020 Covid19 (?fate?) had struck South Africa resulting in a travel lockdown so people from outside KwaZulu-Natal had to cancel their travel and their appointments: I was able to see the neurologist almost immediately. I reflected on my positive experience with low level infrared light therapy and PD in Post 10, Post 11 and Post 13 (<-click to read those 2020 posts).
2. Parkinson's ZA workshops started in Durban, KwaZulu-Natal Province, in 2022 as a weekly meeting of People with Parkinson's together with some carers. Their plan was to explore a multidisciplinary model of care for two hours, weekly, consisting of occupational therapy, physiotherapy, speech therapy and exercise, etc. as supplemental to the conventional drug-based treatment of Parkinson's. Attendance is free of charge as it is funded by a large India-based movement disorder support society. I attended their meetings for three years until 2025 when my prostate cancer treatment became an issue. 
3. Walking, Cycling & Cueing. Since 2022, I have been walking around our large apartment complex (including inclines and stairs) and cycling indoors (on a stationary cycle). These activities provide effective, physical stimulation for people in need of an accessible form of exercise. Cueing, on the other hand, is often ignored (click on the term above for an explanatory video) yet is essential especially for us People with Parkinson's. 
4. Biokinetics, "focused on improving physical health...through...human movement and customised exercise programs" has become a welcome, weekly activity since May 2026. My wife and I are fortunate to have a biokinetics practitioner, ZP, visit us at home. 
5. Ayurveda regime for Parkinson's. I started consulting an Ayurvedha specialist in 2022 and was happy with the intervention that included a natural dopamine substitute. (Extract below from Post 63 <-click to read:) 

"There was a lifestyle change involving the following: a diet avoiding certain flour and bread; avoiding stimulants such as coffee and alcohol; avoiding certain milks; avoiding processed food; deep breathing exercises; PD stretches/exercises; and meditation. Eating should be carefully paced and enjoyed rather than rushed.

In addition there were herbal remedies to take daily: two capsules daily to relieve stress (Ashwagandha); two capsules daily for anxiety and to assist the memory (Brahmi); and three capsules daily to assist with dopamine replacement (HP500).    

Unfortunately, the HP500 only worked for me from January 2002 till March/April 2025, when I stopped taking it. (In Post 64 {<-click to read} I will elaborate why I stopped.) However, I am still taking the other two herbal remedies, I meditate, I am doing the breathing exercises and still avoiding certain foods and ingredients." 

CONCURRENT CONDITION: 2024 ➙

In 2005 I had my first prostate wake-up call in the form of minor surgery in a doctor's consulting room when he performed a biopsy to remove tissue from my prostate gland to test if it was cancerous. 

Three more biopsies and medication followed over the years as did  overnight hospital stays until I was asked to also have a PET scan (that included being injected with a mild radioactive substance) in 2025. The outcome: I had prostate cancer (PC)! 

An Oncologist and a Urologist were engaged and saw me regularly both for examinations as well as treatment. This included two treatment regimes.

1. In 2025 I had 5 months of Hormone Therapy comprising 6 injections to lower my testosterone levels as prostate cancer apparently feeds off one's testosterone! An unfortunate side-effect has been permanent hot flushes (I normally perspire profusely) and another is weight gain.
2. In January 2026 I also had a Brachytherapy procedure during which my prostate was injected with tiny radioactive beads to provide internal, direct radiation targeting the prostate gland only. This radiation has a life span of about 10 months from its maximum radiation capacity in January 2026. The complication was during the first few months when I was forced into self-isolation because I posed a "danger" to particularly my/any grandchildren and any young/pregnant women.

While there is no recorded interaction between my Parkinson's Disease (PD) and the PC and their respective medications, I did feel poorly for at least 2 weeks after each Hormone Therapy jab. And I guess a lot of the accompanying trauma was in my head! 

MOVEMENT DISORDER SPECIALIST 2025: ➙

By April 2025 my Ayurvedic medicines were not working. I was barely able to move and had become my own worst nightmare: a sedentary seventy-three year old person with Parkinson's. My family physician, Dr RSP shares consulting rooms with a Movement Disorder Specialist, Prof VP. I was encouraged to see him, so an appointment was made in May 2025. 

His examination was thorough and he made fewer glib generalisations than the other specialists I had seen over the years. I was at my wits end. My dopamine was neither flowing nor functioning and neither was I. 

So, after actively avoiding a Parkinson's pharmaceutical drug for 12 years I decided to take the plunge: he gave me a script for medication during the day (3 X Sinemet) and overnight (1 X Pramipexole ER) and I accepted. Naturally I was to start my Hormone Therapy sessions two months later so I was concerned. 

It may be useful to examine, briefly and simply, why the absence and presence of dopamine is significant in Parkinson's. Below is what Kimberly Holland (2026) states in Healthline:

  

"What Role does Dopamine have in  Parkinson's Disease?

 

*Dopamine is a neurotransmitter that supports smooth, controlled movement. In Parkinson’s disease, dopamine drops, causing movement to become shaky, slow, or stiff.

*Symptoms often begin after major dopamine loss, sometimes when 60% to 80% of dopamine-producing cells are gone. Early signs can include poor coordination, trouble concentrating, stooped posture, and loss of smell.

*Parkinson’s treatments aim to raise brain dopamine levels or improve response to dopamine. Treatment options include medications like levodopa and procedures like deep brain stimulation."

According to the website, Sinemet "...is used to treat symptoms of Parkinson's disease, such as muscle stiffness, tremors, spasms, and poor muscle control. Parkinson's disease may be caused by low levels of a chemical called dopamine..."

Regarding the cause of PD, it is stated that the "...exact cause of PD is not known. It may be caused by a problem with how your brain works. A chemical called dopamine helps your brain control your movement, thoughts, and feelings. PD causes brain cells that make dopamine to die, so they cannot make enough dopamine."

Enough said. I believe I've presented a reasonably thorough review of my health from 2005-2026. Sigh!

CONCLUSION: now you see me, now you don't

I have found the impact of Parkinson's Disease (PD) and that of Prostate Cancer (PC) quite different and  quite scary. 

The effect of having PD is physically manifested so I can see and feel my tremors, freezing, light-headedness, heavy legs, weak knees, and so on. However, during that window period after I have taken my medication during the day, the Sinemet magic occurs and I feel "normal". And accordingly, anyone watching will be able to see my PD when my Sinemet dose wears off. That's how a movement disorder works, right? It's often so visible!!!

On the other hand, besides the weight gain and hot flushes, no-one will have any idea that I have PC. It's only when I visit a Cancer Centre to see my Oncologist or sit in a room filled with people having their chemotherapy that I am aware that I too, have cancer. It is dangerous, quiet and deadly. It's invisible!!! 

But I'm still here and dealing with life, courtesy of my wife and my carer. Till next time, dear reader, stay well and safe.

(67) REVIEW: "PARKINSON'S STORIES"

COMPARING RESEARCH ARTICLES & SHORT STORIES

Dear reader: apologies for the long Blog silence since December 2025 - I needed to recover from major surgery involving my prostate - I am a lot better now...Ari 

In Blog post 67, I am going to examine one difference between research articles and short stories, then offer an overview of Miller Caldwell's recent short stories' publication: "Parkinson's Stories". 

Within the research context and according to Hiebert, et.al. (2023) in the prologue (p.xvi) of their book, 'What Is Research, and Why Do People Do It?", educational research is: 

"the process of anticipating claims and checking if they are correct [and is] part of scientific inquiry, a research process used across all disciplines...and checking claims is formulating, testing, and revising hypotheses... [also] we define “hypothesis” as a potential explanation for something based on what is currently known but not yet proven, or as a tentative explanation for reported observations..."

Let's revisit the idea of a hypothesis as described by Hiebert, et.al (2023) above, namely, 'a potential explanation for something...currently known but not yet proven, or as a tentative explanation for reported observations'. Such 'reported observations' are exactly what Dr James Parkinson had observed, then presented in 1817 in "An Essay on the Shaking Palsy". They could also be what we see when we observe other People/Person with Parkinson's (PwP): therefore we have working hypotheses, right?

Let's reconsider the 'hypothesis': if I wrote my Blog posts as journal articles, then my potential audience would be mostly other academics in search of info and data on PD, and my hypotheses. However, I believe that my Blog audience is generally non-academic PwP, who would rather read about support systems and success stories from PwP. In other words, I should provide a simple description of events instead of a complex scientific explanation? Now, if the Blog posts are not journal articles testing hypotheses, i.e. 'a potential explanation for something...currently known but not yet proven', then they could be short stories that describe simple, working hypotheses, okay?

According to Ryan O'Neill (2023) in Writers on Writiing 

"... the length of the short story teaches discipline and economy in expression. Writing a novel is like flying a 747, with plenty of time for take-off, flight and landing. Writing a short story is like trying to get a plane off the ground as you are in the process of building it."

The absurd graphic of people building a plane while it is flying (courtesy of Shutterstock) attempts to illustrate the challenges of writing a short story compared to a novel, as described by O'Neill. In a short story (i.e. O' Neill's plane), the writer does not have the luxury of many chapters to develop the storyline as one would in a novel (i.e. O'Neill's 747). However, the power of a short story is in its length as the writer needs to pack a lot of content into a few pages. The short story focuses on description and on the "outer" appearance rather than a research article's scientific explanation, that generally focuses on "inner" detail. I hope that makes sense, dear reader.

So, Miller Caldwell's PD publication of short stories is an ingenious way of presenting a series of working hypotheses and simple descriptions - in the shape of short stories by PwP - to the worldwide community of PwP in an accessible format. Well done, Miller!

  

MILLER CALDWELL'S PD SHORT STORIES

An author of more than two dozen published novels, Miller Caldwell, was diagnosed with Parkinson's Disease a few years ago. He decided to compile a collection of short stories by individuals who have PD. Author selection would be based on responses to specific questions (see Request below) regarding the life of the PwP before PD, after diagnosis, and during the onset of PD, which provided a framework for each story. This Request for contributions was circulated online and internationally. 

The result has been a Miller Caldwell 2026 publication called "Parkinson's Stories". It is a charity book for Dundee University's Parkinson's Group generated by Troubador Publishing.               

Miller's Request served as a framework for contributors and it appears below. 

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REQUEST FOR STORIES (book, p.ix)

This book gathers stories from the Parkinson's community. With more than 40 symptoms, no two Parkinson's sufferers seem the same, even each day. I decided to make this book a useful expression of Parkinsonian experiences. I have asked these questions to people with Parkinson's Disease:

1. What did you do before you were diagnosed with PD?
2. Recall the moment you were diagnosed.
3. Were you working at the time and, if so, did your work put in place any adjustments?
4. How are you coping now?
5. What can you still do?
6. What cant you do now?

Please finish your narrative with a section entitled CURIOUS FACTS about yourself or your experiences. If you are willing, send a photo of yourself too. Please send them to me, and the book will emerge. Thank you to all who have contributed. 

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Below is another excerpt from the book that provides a brief overview of the book's content and appears on the Troubador Publishing site.

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SYNOPSIS (from the Troubador Publishing site)

"A delightful collection of Parkinson’s stories from first diagnosis to brain surgery and creative cures.

Contributions from South Africa, Canada, the Netherlands, America, and many parts of the UK inform, entertain, and enlighten readers about this universal ailment.

In his Foreword, Professor Miratul Muqit speaks of the need for the medical profession to hear the responses and listen to the concerns of Parkinson’s sufferers.

This book is essential for all newly diagnosed cases. It explains how we adapt to our illness.

‘I have learned and continue to learn that each person is vital for determining treatment options to maximise response and quality of life. We also know a great deal more about the underlying biology that explains why brain cells in Parkinson’s may succumb with a promise of new treatments that could slow the disease that has to date remained elusive.’

- Professor Miratul Muqit, Dundee University"

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CONTENTS

"A delightful collection of Parkinson’s stories from first diagnosis to brain surgery and creative cures" is an accurate description of what you will encounter, dear reader, in the context of Parkinson's: mostly pieces of writing where most describe a set of working hypotheses and a few are scientific explanations of elements of PD and even foreseeing a cure.   

*There are 30 stories: 23 PwP from the UK (21 from Scotland & 2 from England), 3 from the USA (including a columnist), 2 from South Africa, 1 from Australia & 1 from Canada. Some of the professions of PwP represented are a poet, academics, medical personnel, sportsmen, a herbalist, farmers, researchers, landscapers, textile industrialists, and an author...

*Among the 29 contributors' gender, 8 are female and 21 are male.

*There is also a 2024 report from the American Parkinson's Disease Association regarding their advocacy for PD at government level.

What I found useful and in support of my earlier distinction between stories 

and research articles is the presence of 26 stories, 3 research reports (stories 28, 29 & 30) and a PD organisational report (story 9) all in one publication. An unlikely set of "bedfellows" to be found in a single book. 

In addition two stories are by senior spokespersons of Parkinson's UK and Alzheimer's UK both of whom are PwP. 

A useful addition in this book, especially for those newly or recently diagnosed PwP, is A BRIEF SUMMARY OF PD (pp xi - xiv) that includes a useful section of ADDITIONAL FACTS!

CONCLUSION

  
Where one might normally have to consult a "Parkinson's Disease Handbook" on how to treat and/or recognise PD - and it is likely to also contain technical language and/or jargon - Miller Caldwell's compilation of Parkinson's Stories contains an informative and entertaining collection of stories and information from PwP, as well as thoughts from a few medical researchers and a neurologist, for good measure!! And the stories' length varies from 1 page to 15 pages long.

An excellent book for anyone with or interested in reading about Parkinson's Disease...  

(66) PD BLOG: NEWS & STATS

PERSONAL UPDATE

😔 I'm struggling with two health issues, dear reader. I have been responding well to my anti-Parkinson's drugs since mid-2025. (Remember, my diagnosis was in 2013 but I opted for a drug-free complementary approach till 2025.) BUT now, I've been diagnosed with and being treated for prostate cancer, AND together, they regularly create chaos in my body. Hmmm, PD and PC...

 

Currently, I'm half way through the first part of my cancer therapy and will soon know if there's going to be a second part, that is, radiation therapy. I live in hope.

😁 However, I'm also celebrating the fact that I was chosen - along with a few dozen others, worldwide - to contribute to a book on People with Parkinson's (PwP). We were asked to write a short reflection on our life journeys before and after Parkinson's Disease (PD). The compiler is renowned and prolific author, Miller Caldwell, who is also a PwP. 

The book is entitled "Parkinson's Stories" and published by Troubador Publishing (<- select Bookshop and type the book name in the search box). Many other publishers will also have them available soon. This publication was released on 26 November 2025. 

BLOG UPDATE, December 2025

It is about 5 years since the launch in March 2020 of this Blog, parkinsed.blogspot.com. Out of curiosity, I reflected in Post 42 on the stats and viewders' countries of origin in April 2023 when there were a few thousand "viewders" (I was unable to distinguish between viewers and readers, so I combined the two words). I repeated this exercise earlier in 2025 in Post 60 and discovered there were thousands more. So, I was amazed when I checked on the numbers yesterday...! 

🥁🎺🥁 The total number of viewders since the 2020 launch, is now = 22,940.🥁🎺🥁

Wow! Thank you, viewders, this is most heartening when I consider that it was a mere 2,138 in 2023 which grew to 13,700 early in 2025.  

I am really pleased because the Blog name "parkinsed" is not a conventional one such as "Parkinson's Disease". This means that a 'viewder' would have done a specific search for information regarding this movement disorder to have come across my "parkinsed" Blog site.  

Naturally my posts are from within a South African context so I expected the local readership to have constituted the majority. Two local organisations (Parkinson'sZA as well as Movement Disorders Support) have added my Blog to their websites thereby boosting local interest and my ego.

WRT the top six countries' viewders (and they constitute a total of 18,917 viewders) who have been reading this PD blog, in order of viewdership size, they are as follows:

1. South Africa;
2. Hong Kong;
3. Brazil;
4. Singapore; 
5. USA; and
6. Vietnam. 

In addition, I am impressed with the spread of countries - that now includes Brazil, Indonesia and Ecuador - as compared to their actual numbers: another encouraging indication. But more interesting is a glimpse of the five year overview below together with their numbers. 

Again, I am pleased with this overall spread that could indicate a general, worldwide curiosity about Parkinson's Disease because of its growing impact. Remember, the current estimate is that, worldwide, about 12 million people are living with Parkinson's Disease! This general interest in my Blog may be followed by, I assume, a specific interest in what I have been sharing in my Blog posts. Hence, I assume that 'viewders' have found it useful to read about my years of personal strategies, tips and tricks of coping with this movement disorder as described in many  of my posts, both pre and post anti-PD drugs.

BLOG STATS, ALL TIME (Mar 2020 ➜ Dec 2025)

The spread of countries becomes more interesting (compare the previous stats in Post 60) when looking at a 2025 overview. The details below were sourced in December, 2025 from blogger.com's statistics.

Under the heading "TOP LOCATIONS" in Blog Stats, I found the following information, for this Blog for the period ending December 2025. A breakdown of the total of 22,940 viewders  according to the country and their viewdership.  

• South Africa--- 6,170
• Hong Kong---- 4,190  
• Brazil----------- 3,007        
• Singapore----- 2,390
• USA------------ 1,600
• Vietnam------- 1,560
• Germany-------- 406
• France----------- 336
• Austria----------- 308 
• Argentina-------- 245
• Russia------------180
• UK-----------------161
• Australia----------152
• Mexico------------146
• Indonesia--------128
• Ecuador----------127 
• Finland-----------122
• China-------------116
• India--------------- 74
• Other---------- 1,398

The "OTHER" which generally represents a host of small value viewders (single and double digit numbers) is also significant as it constitutes 13% of the total of 22940. Do compare these numbers with Posts 46 and 60 referenced earlier in this Post. 

CONCLUSION

Now that typing is becoming a challenge, I need to investigate alternative forms of input for this Blog for 2026, besides typing. So, that's my new project. 

I hope your PD or Movement Disorder or ailment eases during this holiday period. Stay well and safe, dear reader. AND ThAnK YoU for your support, everyone!

(65) PD: FINDING YOUR FEET.

SOMETHING'S AFOOT

In line with sharing thoughts on Parkinson's Disease (PD), I wish to make my feet a feature of this Post and lay bare, foot issues. While we inch forward with gusto, I'll be banging on a conundrum about my ugly hammertoes, problematic flat feet (=overpronation) and unsightly bunions, thereby providing food for thought for sole-food consisting of "'unions", tomatoes and potatoes...(huh?).

Unfortunately, dear reader, I am unable to kick the habit of punning, so, if you wouldn't mind toeing the line with me, we can slowly shuffle forward together. Otherwise, you can buzz forward like a mosquito...(okay, okay, I'll reboot). 

I have been making use of foot specialists since I was 50, across three provinces in South Africa, because of my problem feet. This was also long before my Parkinson's diagnosis.

First, I became self-conscious of my bunions (similar to pic ➠), those bumpy outgrowths on the side of the big toes. In 2002 I discovered that an Orthopaedic surgeon could surgically remove my hallux valgus but, as such a procedure is expensive and can be painful, I didn't proceed with it. 

I may have worn inappropriate footwear when I was growing up which might have caused my bunions and the hammertoes, where the ends of some toes are bent downwards. However, because my parent had bunions and a sibling has overlapping toes as a result of flat feet, like I do (similar to pic ➠), our bunions are likely to be hereditary. Also, bunion removal would have been cosmetic as they weren't painful. 

Next, in 2005, I tried to fix my flat feet, which is when the undersides of one's feet do not have arches, and that's when I discovered medical Orthotists/Prosthetists. Prosthetists (⇽ see video) are those miracle workers who provide artificial limbs (prostheses), for soldiers or accident victims or others who need to be mobile and functional again. 

Orthotists are healthcare professionals who analyse your gait, i.e. the way you walk, either using a laser scan with computerised analysis, or conducting a simple visual inspection or even just making you walk barefoot over powder on the floor (I've done them all). Based on their bio-mechanical assessments, their diagnoses enable them to generate customised, inner soles or shoe inserts. One should have regular assessments to determine any foot changes, something I have sometimes neglected :-(.  

The function of my orthotic inserts - as well as regular reassessments by an Orthotist - is an attempt to realign and support my flat feet through re-formation of my arches. My inserts attempt to correct overpronation, which is where my feet, incorrectly, "roll inwards" when I walk, which has resulted in a gradual flattening of my arches over time. I have been wearing orthotics since 2005. 

Another specialist worth seeing if PD is affecting your gait, as well as the general condition of your feet and ankles, is a Podiatrist. I am fortunate to have a caregiver who's skilled at footcare issues. I used to have swollen ankles and ingrown toenails regularly, until my caregiver, LM, started working on them :-). A pedicure with a Podiatrist or nail technician is worth the effort and expense! 

*NB: attend to your feet when you're young - it will be much harder when you're older.*

BACK, KNEEE AND FOOT PAINS

As I have mentioned, my PD sometimes distracts me from keeping track of all my health issues, so my last visit to a medical Orthotist was in 2002 and I thought my feet were fine. So recently, in October 2025, I consulted JK, who runs a Medical Orthotist and Prosthetist practice in Durban, for an assessment and new orthotic inserts. I had also been struggling with the following: 

1. Since August 2025, I have had painful ankles and heels  (especially the right foot) and I have been wondering why;
2. I have also noticed my knees are flexed and point forward rather than being straight;
3. My back, on either side of my spine, (I've checked my kidneys and they're fine), is often sore during the day; and
4. Of equal concern was that my festination is becoming more prominent and less controllable.

So, I analysed the above problems (feet, knees, back, gait) by noting possible causes before conducting an online search and I came up with three possibilities.

 

1. EXERCISE  

• I have been cycling on a stationary cycle for at least 20 minutes daily. Could that have been the cause of painful knees and ankles. Am I cycling too much? I have been cycling for many years, so why is it suddenly causing a problem?
• Also, the pedals of my stationary, Threshold Mini bike, have adjustable straps above each pedal:  could these have been hurting my feet?

2. AGEING 

• I am 73 years old and have a slight stoop. Could there be spinal changes, together with weakening muscles and poor posture, resulting in my body adapting to improve my balance. 

3. FOOTWEAR 

• I regularly wear slippers that do not offer firm support for my heels and ankles.
• I have been wearing the same sandals (I have two pairs so I can alternate!) since 2023. They are comfortable and easy to put on and to fasten, but offer little arch and ankle support.
• I also have a good, lightweight pair of shoes. While they offer good ankle and foot support, they are difficult to put on, nowadays laces are difficult to tie and I need to wear socks (difficult to put on). 

MY OBSERVATION All three possibilities above (1.Exercise, 2.Ageing and 3.Footwear) could have resulted in my sore back, knees and ankles. By the week of 13 October, my caregiver, for a whole week, had to rub my feet and my lower back with a cannabis-infused "butter". There was some relief during the day but little overnight. By Wednesday 22 October, my wife had to rub my back again with the cannabis-infusion during the night because I was in pain. 

A mould of my feet was made to construct a new orthotic insert, and on Friday 24 October 2025, I collected my new orthotics from JK, a medical Orthotist I had consulted. This was 11 days after the cannabis massage started. I tried on my new inserts that day and that night my feet were sore, a standard response to a new orthotic insert. And then there was gradual relief... 

PD & FEET

MY OBSERVATIONS 

• The indirect effect of Parkinson's Disease, particularly my tendency to stoop and hunch forward, results in an imbalance of my weight. That stoop, in turn, puts pressure on my knees, ankles and heels. The orthotic insert, attempts to correct my flat feet by creating a slight arch that shifts my stance and balance by making me straighten my knees. This moves my centre of gravity slightly backward. By Friday 31 October most of the pains had subsided. YaY, new orthotics!
• Over the past 20 years I have taken the humble orthotic insert for granted, until 2025. Now I respect its presence and the expertise of the medical Orthotist.   

OTHER OBSERVATIONS

• A research project in Spain on foot health, by Navarro-Flores, et al. (2022) examining 62 patients with PD, concluded that Parkinson's "...presents a greater negative impact on foot health and quality of life which appears to be related to the chronic neurodegenerative disease." While this project used a small sample, in the context of my Blog, this conclusion is significant for me and my experience, in the context of Parkinson's.

• Linked to foot health, is the incidence of falling as researched by Creaby and Cole (2018) in their research where they concluded that "Falls represent a significant problem for people with idiopathic Parkinson's Disease (PD), with ∼60% of people with PD falling per year." I have been very conscious of preventing myself from falling, especially at home, where there is furniture, sharp edges and other natural hazards. Any walking inside or outside is to be taken seriously by us PwP. Also, I try to do outside walks after having taken my anti-PD meds.

CONCLUSION

My prosthetist, JK, said to me "joints love movement". I paid attention to his comment, hence this topic. 

According to physiotherapist Ramaswamy in the Parkinson's UK Magazine, the ankle and foot have 26 bones, 33 joints and more than 100 muscles, tendons and ligaments. That would explain why it was so difficult to address my recent foot and ankle pains (as described above) with a standard massage. 

Also, according to Ramaswamy, "The heel striking the ground is the body's signal to the brain to generate the power to push forward." With PD and the sometimes accompanying festination, the heels do not play a major part in shuffling. Now I understand the importance of the cue 'heel-toe-heel-toe' for motion and balance.

I have renewed "respect" for the presence and impact of this bl)0@£y movement disorder!

Till next time, dear reader, stay well and safe.

ADDITIONAL READING

1. How orthotics helped one patient with Parkinson's walk 18 miles pain-free = Podiatry Clinic UK 
2. Choosing the right shoes for Parkinson's = Parkinson's UK
3. The effect of personalised shoe insoles on Parkinson's = ARTICLE
4. Impact of footwear and foot deformities on patients with Parkinson's = ARTICLE 
5. Parkinson's foot pain: problems and treatments = info
6. Effect of foot health and...patients with Parkinson's Disease = ARTICLE