(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 

(64) Hindsight for Foresight (Phase 4)

PHASE 4: LIFE, PARKINSON'S & ME

Personal Theory

I have had a number of challenges in my life since birth and I would like to think that, over time, I have learnt something from each of those experiences: but, learnt what? In my honest opinion (IMHO), often, I think that my learning is only complete, if:  

1. There is a demonstration by me, as the learner, of what I have learnt; as well as 
2. Some form of test to check if I understand what I have learnt. 

So, challenging Parkinson's, IMHO, may be doable if the person or people with Parkinson's (PwP) - that's me - tries to learn how such a disease reveals itself, what my analysis of it tells me, and then, can I do anything about it? The big question would be: do I tolerate it or do I fight it? |f I feel I am up for this challenge, then I can observe it and analyse it, find defence strategies and then fight it. Only once I have started this process can I consider the testing phase. All this is gradually revealed in this Post. 

I will start my demonstration of what I have learnt by asking you, dear reader, to watch the short video below, on Parkinson's as a movement disorder. 

📖  Unfreezing with Cueing 

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

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

 

1. (TIMER 0 - 1min38) The OFF period presents the PwP with the greatest challenge of PD when his muscle memory/forgetory (see 2020-2025 notes below) is at its worst and he is most vulnerable. This is evident in his shuffling gait and small steps. The video then shows how difficult it can be for him to be able to turn around 360°. But then, most of us PwP experience this daily, right? 
2. (TIMER 1min39 - 2min04) Although he is still in his OFF period, see how differently he moves when there is external visual and auditory cueing. I have been using external (voicing) and internal (silent singing and prompting) cueing for many years (2013-2025) especially while I was not on medication and this strategy has been very effective for me (➣ SEE my Post 27, as well as Post 42).
3. (TIMER 2m05 - 2m31) Compare the effect of cueing above during the OFF phase with his ON phase when PD effects not visible as symptoms are under control. Look particularly at his gait control in relation to cueing during the OFF phase in PD.  

📖 January 2022: Ayurveda

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

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

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

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

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

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

📖 May 2022: Residence

My wife and I retired to a large apartment complex in Durban in March 2020, where we had an already refurbished, third-floor apartment prepared for our retirement. It overlooked a race course, which was cool, but the challenge was that we had to walk up six flights of stairs to reach the front door. At the time, 2020, we were still based in Pretoria.

Fate took charge in March 2020 when COVID-19 prompted a national lockdown while we were on holiday and, as we were unable to travel back to Pretoria, we decided to start our retirement in Durban. By this stage of my PD, having to climb six flights of stairs (48 steps) to access our new apartment was good exercise but not safe for me and my dodgy balance. So, in 2022, a few years later, we moved to a road level apartment in the same complex. Now, I only have two stairs to climb up from the road: Yay!

📖 June 2022: Caregiver

My wife sourced and hired a caregiver, Ms NM who had been working with PwP for a number of years. Prior to her arrival, I had had a few daily routines that suited my ego but had not established anything specifically focused on challenging PD or actively working against its impact. 

I was not engaged in constructive activities to strengthen my brain, my body and my attitude towards PD. NM changed my daily lethargic slumps with specific stretching routines. I suffered with swollen ankles since 2019 but her regular foot massages have gotten rid of those swellings.   

📖 August 2022: Parkinson's ZA

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

The PZA approach is to facilitate a "Multidisciplinary 'Model of Care' established by PDMDS in 2001." Such an approach is rooted in rehabilitative treatment as well as lifestyle management for PwP rather than on a purely pharmaceutical approach. They draw on various therapies, on dance, on the creative arts, etc. to address the needs of and to support those PwP. I joined them in 2022. They offer free, weekly two-hour support sessions always facilitated by the PZA staff in conjunction with a consulting professional. There is also weekly table-tennis for those who are able to attend. Another way to challenge this onslaught of PD! 

Their weekly two-hour sessions include warm-up and warm-down exercises that supplement specific activities. These include a focus on countering PD symptoms such as targeted stretching of the torso and limbs, music and movement, accompanied with some theory and illustrated handouts. A few times a year there are drawing and writing sessions, social gatherings, visiting specialists, as well as focussed sessions especially with the caregivers who are present.

📖  FAST-FORWARD TO 2025...

📖 2025: MUSCLES & MEMORY

Early in 2025 I started to feel quite weak both physically and mentally. The areas affected physically were my shoulders, arms (upper and lower areas), midriff (torso/tummy area) and my legs (from knees to ankles). I felt mentally exhausted too and I was depressed as I thought I had reached the final stage of life. And there was much FOG.

I believed the physical and the mental might have been linked. How? Well, let's engage in more hindsight (or speculation :-) and the presence of my muscles...

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

My speculation was that if I could encode an "amended message", then my brain, nerves and muscles might be able to decode it. Once received and activated, that amended code should jog my now PD-infected memory into action allowing me, for instance, to effectively move a limb. In Post 6, I wrote, tongue in cheek, about the likelihood of this lowered dopamine and 'unclear messaging' in my body leading to faulty muscle memory. I speculated that such a fault should then be regarded as "muscle forgetory" :-), and that it had probably led to my poor coordination and bumbling gait. 

The presence of muscle memory is to allow muscles to repeat specific contraction and stretching actions after a period of non-activity. Neural pathways in the brain are strengthened when there is repetition of an action. My interpretation, is that there is a sort of diagram, inside a body's internal mapping system that is stored and is retrieved when required. Then there is also the notion of automaticity, when the action of swallowing food or playing a musical instrument may occur automatically without conscious thought. These are unconscious support systems that are attacked by PD. 

However, the presence of PD generates the gradual and systematic depletion of dopamine resulting in weaker and weaker messaging being relayed. So, instead of a clear message instructing me, for example, to "Walk, by first placing my right foot forward", PD probably results in a garbled message instructing me to "Wak, by fit plcn my rgh fot fowd". The result is confusion in the decoding department of my body and the consequent freezing of actions. Hence, I have tried and believe that using my own forms of internal (counting, singing or humming silently) or external (music or the equivalent of a metronome) cueing (or what I had called "corrective messaging") is an invaluable substitute whether internally or externally generated. Cueing is a conscious support system for us PwP.   

I had another revelation years ago while struggling to get a foot into a sandal. As the PD had started on my right side, my right foot gradually become less responsive to instructions, such as sliding feet into footwear. My right foot would freeze and the longer I stared at that foot the less responsive it would become! I was concerned that, after regular occurrences, the slowed action of sliding my right foot into footwear would be reinforced and stored as the new normal. This might gradually slow down to a freeze. 

One morning, out of sheer frustration, I shut my eyes, cursed loudly and my right foot slid slowly into the right sandal without any freezing of my right foot! A moment of serendipity! I discovered that I could slip on my sandals simply by keeping my eyes closed: wow! Try closing your eyes. It works, even in the loo!

📖 Jan-Feb-Mar-Apr 2025

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

However, after years of so-called immunity/protection from Parkinson's via, amongst others, my Practiced cueing, PZA support, New homes, Caregiver support, Wife support and much Blog reflection on being parkinsed, my immunity was shattered. Over a few months, my PD crept up on me surreptitiously and then slowly throttled me during February/March/April 2025! 

Well, in my defence, dear reader, in March 2025, I had just turned 73, and I had been diagnosed with PD when I was 61, so... 

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

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

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

📖 January 2025

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

I had had conversations with my friends at the weekly PZA workshops and many were taking daily doses of laxatives because constipation was a side effect of taking anti-Parkinson's drugs (a-Pd). So maybe it was either my diet or growing anxiety.   

📖 March 2025

Since 2017 I had been falling a couple of times a year. These were the mandatory PD falls :-). Fortunately, these falls left me with cuts, bruises and scrapes but, luckily, there were never any broken bones as a result of my annual falls. Then I had a fall on the night of 03 March and it drew my attention both to my age and the need to be more cautious. Since our move to Durban in 2020, our GP, Dr RSP, was constantly reminding me of the dangers of PD and that I should consider taking an a-Pd. Naturally, I was not keen, not until my March 2025 fall, just before going to bed. 

That fall left me lying flat on my back, on the floor, and my wife was unable to lift me up. I lay there, thinking, and then realised that I needed to roll over onto all fours (onto my hands and legs, tummy on the floor). Then, from the floor, I would be able to push myself into an upright position, in order to drag myself onto the chair my wife had pushed into position near me. The entire episode (the fall, the solution and standing up) took 15 minutes, but represented a lifetime's worth of anxiety and learning. 

📖 April-May 2025 RELIEF

So, when I went to Dr RSP on 30 April for a checkup and repeat scripts, I mentioned the fall. He immediately recommended that I see a neurologist, Prof VP, a movement disorder specialist. They shared consulting rooms over weekends and so my GP made the appointment for me. When we arrived (Saturday morning, 03 May), I was already weak, I could barely get out of the car and was unable to use my walking stick. It took ten minutes to get out of the car, to walk up ten stairs and to seat myself in the waiting room. 

When Prof VP ushered us into his consulting room, I was unable to lift myself onto his bed for the examination, so he and my wife had to lift me up. An hour later he had completed his examination and was ready to prescribe my first anti-Parkinson's drugs: I was to try a daily drug and an overnight one.

CONCLUSION

I started the anti-Parkinson's drugs on 06 May and, so far, they have been working for me. I hope to get a few years' joy from this intervention! Currently, for my PD, I am on a chronic prescription of Sinemet (thrice daily) and Pramipexole overnight. I am still taking the daily dose of Brahmi and Ashwagandha as well as a chronic med for hypertension, something I have been taking for many years.

😃BSERVATIONS

UPSIDE 

• My recovery since 06 May has been extraordinary. I walk upright without stooping, without a walking stick, and swing both arms during a brisk walk. YaY! 
• Our complex has about 100 apartments and many residents have commented on my recovery, my walking action and my upright stance. 
• For most of the day my gait is almost normal.
• Seldom do I experience freezing of actions. 
• This ON period lasts for most of the day, so far, and I pray it lasts. 
• Also, I am seldom constipated!
• A few fine motor skills have returned.
• My GP has noticed the physical change in me.
• (Together with the a-Pd I have to exercise daily and cycle regularly.)

DOWNSIDE

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

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

(63) Hindsight for Foresight (Phase 3)

PHASE 3: LIFE & PARKINSON'S (2018-2020)

I ended Post 62 with thoughts of self-pity and feelings of insecurity, perhaps because I was reflecting on 2017 as the end of a fulfilling academic life in higher education since 1977. Also, between 2013-2017, in an attempt to deal with Parkinson's without medication, I had a physically active life. So, why was I suddenly insecure in 2018? 

Maybe I was attempting to suppress my emotions due to the visible signs of nearly six years of Parkinson's Disease (PD). I am referring to PD's motor symptoms (slowed movement, tremors, stooping, poor gait and freezing). I became self-conscious in public spaces and I am still experiencing that! My new reality was probably the cause of my growing sense of anxiety. Sadly, my anxiousness affected my wife too. I needed to locate a reset/restart button, and I did...

In 2018/2019 I discovered a physical activity to kickstart my waning energy levels: dance classes for PD people like me. I was excited about a challenge for the first time in years! The weekly class in Pretoria was led by a trained Dance for Parkinson's teacher MarnaB, who was passionate about us and her teaching. Dance activities were a combination of seated, standing, solo and group exercises with appropriate music and instructions. I was relaxed, less anxious and challenging PD again. Dance for Parkinson's (DfP) is based in New York city and offers regular online DfP classes.

Unfortunately, there is still no physical DfP class in Durban. The online class is convenient but it's not engaging. The live dance class in Pretoria allowed me to share time (e.g. group coffee dates), space and energy with other People with Parkinson's (PwP), which one cannot experience in an online class, right? But, like the online 25-minute Gentle Chair Yoga and the 5 Minute Tai Chi, online DfP is a great option for PwP, especially when fighting PD with regular exercise.

ANXIETY & PARKINSON'S

A brief detour before we return to my PD story, dear reader. I will try to unpack anxiety and PD in the most accessible way that I can...

According to Dissanayaka, Torbey & Pachana (2015) "While assessment of depression in PD has been a focus of clinical research for the past decade, assessment of anxiety in PD has only received attention very recently, despite the high prevalence of anxiety in PD." Their literature search identified nine scales with which to measure and then grade anxiety and depression, including a new Parkinson's Anxiety Scale (PAS) for PwP. However, this PAS excludes those with dementia. 

The authors acknowledge the PAS usefulness and believe it's a valid instrument to measure anxiety. However, they observe that more should be done regarding examining levels of anxiety in the "off" period during PD medication times. Also, in their scan of available research, they note there is no indication of physiological change or accompanying signs and symptoms in PwP during these "off" periods. Hence, they believe that additional research is needed to develop more appropriate instruments to measure anxiety in PwP. 

Khatri, et al. (2020) agree with this in their article: Anxiety: an ignored aspect of Parkinson's Disease lacking attention. They suggest that anxiety in PD has a negative effect on PwP and that anti-Parkinson's drugs like "...Levodopa provides symptomatic relief...[but] its effect on neuropsychiatric complications like anxiety is elusive. Presence of anxiety worsens the condition and challenges therapeutic management of the PD." 

This concern was addressed recently. In July 2025, a New York university psychologist received a grant from the Michael J. Fox Foundation to do further research into anxiety. Professor Bishop is of the opinion that there are "unique features of anxiety [that] suggest that it is organic and not simply a perception driven by disease diagnosis." Such anxiety features actually echo the earlier concern of Khatri, et al. (2020) and include research into "autonomic symptoms, such as sweating, a racing heart or physical nervousness".

A graphic abstract of what Khatri, et al. (2020) describe as the "Mechanisms involved" in creating anxiety and examples of a possible "Therapeutic strategy" is below. Their main concern with a purely Pharmacological treatment of anxiety is the possibility of severe side effects while the PD continues unchecked. Hence they suggest one should consider "Complementary therapies". 

I have tried complementary therapies and suggest that PwP look into Ayurveda as well as the effect of Meditation (mindful meditation or transcendental meditation) as additional support to lessen the effects of PD. I am unable to comment on a "Non-Pharmacological Approach" such as DBS (Deep Brain Stimulation) but have added a link to some info. The same applies to CBT (Cognitive Behavioural Therapy) as well as TMS (Transcranial Magnetic Stimulation).

 

Another "complementary therapy" is acupuncture. According to Pinto (2022), in Regular Acupuncture seen to ease Anxiety in Parkinson's Patients, PwP "...who underwent acupuncture for eight weeks had significantly lower levels of anxiety...than those who received a sham procedure, a clinical trial from China reported." Meditation or Ayurveda may be worth trying if it provides relief.

   

A further example of complementary support to ease the effects of PD is to indulge in the creative arts - the visual arts and music - as therapy. Like my joy upon discovering DfP in Pretoria, Inácio (2025), in Creative Arts Therapy can ease Anxiety in Parkinson's... reports that while motor symptoms may be addressed with anti-Parkinson's medication, "Parkinson’s can lead to nonmotor symptoms that significantly impact [the life of PwP, and] may include cognitive decline, sleep disturbances, depression, and anxiety." According to the Inácio (2025) report, a European team (Austria-Netherlands) is now attempting to "bridge medical and arts-based practices, ensuring that our intervention is both practical and meaningful for individuals with [PD]...". Interesting!

For visual learners like myself, dear reader, here is a short video on Anxiety and PD. Anxiety is appropriately described here as a "non-movement symptom of PD".

MY PARKINSON'S JOURNEY: 2020-2024

On 23 March 2020, while my wife and I were on vacation, President Ramaphosa announced a nationwide lockdown to prevent the spread of the COVID-19. The lockdown and ban on all local and inter-provincial travel was to commence on 27 March. Unfortunately, we were 3.5 hours from Pretoria and 3.5 hours from Durban. Solution: travel to Durban and start my retirement there.  

Parkinson's and Photobiomodulation (PBM)

In 2019, a relative (OM) informed me of a Carte Blanche TV documentary on light therapy (see the video), also known as photobiomodulation (PBM). A Durban neurologist, Dr Bhanjan, was using low level infrared light to treat a number of conditions, including PD, at the Durban Neurolaser Clinic. I was curious and enquired but they had a waiting period of 5 months. However, by March 2020 many people had cancelled due to COVID-19 restrictions and so, I was able to get an appointment in April 2020: a serendipitous event... 

In Post 11 (there's a link) I describe the initial introduction to PBM, my scepticism leading to an acceptance of this therapy. After deciding to stay Parkinson's-drug free for since 2013, I noted a high degree of "scoffticism" :-) from many experts in medical science regarding my opting for complementary therapy. They needed evidence-based research and clinical trials of PBM before they would approve. I know an eighty-year old pharmacist (AC) with first-hand knowledge of PD but have yet to meet medical specialists with PD! My experience is merely anecdotal :-(.

My argument is the following: I have lived with Parkinson's and I have first-hand knowledge of both PD's impact on me as well as that of any alternative/complementary therapy (such as ankle weights, fidget spinners, music, dance, cycling or PBM) so I approve when it works for me! 

I reflected on the impact of photobiomodulation on me in Post 13 and a summary appears below: 

  

"DURING PBM THERAPY (period: 05-29 May, 2020)  

(i) I experienced a sense of my brain coming online again - it was the old "me".

(ii) The resting tremors subsided during therapy.

(iii) My right hand dominance returned from time to time, a pleasant surprise. 

(iv) My right leg was less "leaden" and more responsive.

(v) I stopped using a walking stick to walk from the car to the neurologist's rooms.

(vi) I often slept through the night.

(vii) (👍  I was more confident and more active.)

AFTER PBM THERAPY (period: 30 May to 08 July 2020)

(i) I feel I am in charge of my thinking again - there's more "me" and less "intruder". 

(ii) The resting tremors are worse and occasionally more intense.

(iii) I continue to experience deteriorating muscle coordination, especially my right side.

(iv) When I walk I have started to drag my right foot as I did before therapy.

(v) I have become more reliant on my walking stick.

(vi) Seldom do I sleep through the night.

(vii) (👎  I have assumed PBM would lessen the effects of PD so I've not been exercising.)"

The fourteen observations above (May-July 2020) gave me some insight into my intruder, PD, and how difficult it was to devise a plan of attack. There were some positives but there were negatives too. I had to believe in the big picture and be consistent.

The most positive outcome of my investment in a year's PBM is that my confidence had returned and that this Blog was launched in March 2020. Till August 2025, worldwide, I have had 21,355 visitors to my posts and that warms my heart, dear readers.

Ayurveda

In 2022, after 10 years of being Parkinson's-drug free I opted for the Ayurveda approach to PD. 

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 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. 

Caregiver

In 2022 my wife hired a caregiver who, over the years, had been working with PwP. Besides being a companion and responsible for my well-being, she has created in me a sense of independence. Although she only works for two-thirds of the day, she constantly reminds me what I ought to be doing, and I appreciate that! On weekends and late afternoons I regularly go for short walks on my own, because she has made me feel more confident than before.  

SUMMARY

I had been fighting PD for 9 years without any herbal remedies or pharma products. I believe my body and mind has been building up a form of resistance to PD during that time. All those experiences have generated a cloak of physiological and psychological stubbornness when it comes to my fighting Parkinson's. Unfortunately, the Ayurveda approach was an unsuccessful three-year attempt to control PD.  

CONCLUSION  I am 73 years old. I was diagnosed with PD when I was 61 and I believe it could be due to (1) unconsciously inhaling industrial chemicals (wheel cleaner, paint and glue) and (2) trauma. (2.1) I must have had a platoon of the Parkinson's army infecting my brain from the time of my car accident in 1956/57. (2.2) The Parkinson's army regrouped in 1999 when our son died. (2.3) Then they started actively recruiting a new army in 2012 when I had to take early retirement from a job. So, Ayurveda had an uphill battle for three years. Then Parkinson's took control in 2025 and I was forced to engage a-Pd to survive! 

The concluding a-Pd episode (Phase 4) will be unpacked in Post 64. Take care and be safe till next time, dear reader.