(61) Hindsight for Foresight (Phase 1)

PHASE 1 - Revisiting Life & Parkinson's

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

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

😔😕😖

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

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

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

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

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

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

James Parkinson (1755-1824)

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

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

Environmental or Genetic

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

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

😔😕😖

Parkinson's, my alternative reality

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

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

Whether 'tis nobler in the mind to is suffer

The slings and arrows of outrageous fortune, 

Or to take arms against a sea of troubles,

And by opposing end them?"

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

Could I fight PD with a PhD?

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

Building Mental Capacity 

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

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

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

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

14 November 2023

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

Conclusion

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

The references below were accessed in July 2021.

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