(62) Hindsight for Foresight (Phase 2)

PHASE 2 - REVISITING LIFE & PARKINSON'S

In Post 61 I wrote that I would spend the next three posts on "HINDSIGHT", regarding my new life with Parkinson's, continuing with events and revelations after my first diagnosis mid-2013. So, dear reader, let's proceed...

A medical diagnosis involving a patient and a medical specialist, is an event filled with many questions and some answers. Identifying the specific condition or disease relies - in my non-medical opinion (IMN-MO) - on the specialist's expertise and depth of understanding. This 'depth' is also based on how wide is the range of the specialist's knowledge. So, for example, I would assume that a Urologist would know a lot about the prostate gland and prostate cancer, but an Oncologist would have greater 'depth' and know what treatment would be the most appropriate in the field of prostate cancer. This view is IMN-MO!

Predicting what will happen to the patient and the disease or condition, namely, the prognosis, is also, IMN-MO, reliant on the range and the currency of the specialists' knowledge, especially in the case of Parkinson's Disease (PD).

I believe that when some Neurologists come across a case of PD, the inclination to offer a stock/ standard diagnosis is greater than their willingness to consider alternative diagnoses. One example is the diagnosis of actor Robin Williams in the USA. Robin's initial diagnosis indicated that he had PD but after his death by suicide in 2014, a post mortem requested by his wife showed that the actor actually had Lewy Body Dementia (LBD): an unfortunate diagnosis in a First-World country! Let's connect some dots...

😔😕😖

2013 🔎

In 2013 the diagnosis of my condition by Neurologist DrK (Gauteng Province - see EXCERPT below) was that I was a Person/s with Parkinson's (PwP) and I should be on an anti-Parkinson's drug regime. I was concerned about the side-effects and these drugs' unpredictability, based on published anecdotal evidence as well as research.

EXCERPT: POST 50 ✄✄✄ "...my wife and I entered his consulting rooms. He had a brief chat and then he asked me for the MRI images. I gave him the envelope and waited in anticipation. He spent a minute studying the scan then asked me to walk across the room and back to my seat. Then he observed:

1. The MRI scan was "clear", so he could rule out any other conditions, such as a tumor;
2. However, my walking action indicated that I had Parkinson's Disease (PD): I was dragging my right leg slightly, not swinging my right arm and PD could be the reason for my "leg tremor"; and
3. He prescribed chronic medication for my PD - I accepted the diagnosis but indicated my unwillingness to use the prescription, due to generally unpredictable side effects of PD drugs.

This Neurologist's instant diagnosis based on my walking was impressive and got me thinking. I was at the pinnacle of my career after 36 years in higher education...when challenges emerged, [I would always respond by considerations] based on the familiar (stuff I would have known for a long time) and with what I was comfortable (stuff that would not lead to confrontation)...".✄✄✄

That Neurologist DrK (2013), as well as DrB1 (KZN) 2020 and DrB2 (KZN) 2023 made me feel distinctly "disabled" with the manner and content of their diagnoses. A certain DrP (KZN) 2025 was the most empathetic and professional of them all and I respected his diagnosis of my condition! For the first time I felt comfortable and believed I could trust a Neurologist.

Let's focus on the challenge of weakening physical ability as a result of being parkinsed and my instinctive response, based on many years of enjoying physical activities. Since 1980 I had been a modern dance teacher, a regular power walker, a squash and table-tennis player, a hiker, a gardener and a DIY enthusiast. I thrived on physical activities, until PD hijacked me!

😔😕😖

2014->2020 🔎

Although the neurologist DrK did not use the term in my 2013 diagnosis, I gradually became aware that PD is one of a group of diseases that generated a physical challenge and, therefore, is regarded as a Movement Disorder. So, I started to wonder if physical exercise might keep the PD at bay and keep me less physically challenged for a longer period. This would be in lieu of chronic PD medication.

Between 2013 and 2017 I was based at a South African university in Pretoria, Gauteng Province, that is about 1340m above sea level. I worked in a large cluster of multi-storeyed buildings with long corridors and stair access to each of the floors. From 2014 I consciously focused on my physical ability and spent most of my work time walking in the corridors and up and down stairs rather than using the lift or escalator to attend meetings with individual staff or departments or to go to facilitate staff training sessions. Naturally, lunchtimes could be used for long walks outside the buildings that were located on a huge campus (see pictures). 

I supplemented my physical exercises with large and small-scale equipment (see below).

WEIGHTS During my corridor and stair walks in 2014 I became aware that my right leg was dragging more than usual and my right arm was not swinging as freely as my left. (= DrK's diagnosis!) So, I decided to "remind" my right arm and leg that it was not allowed to remain motionless: I bought wrist/ankle weights.

They were actually bags of a specific weight that are filled with sand and are attached to the body (ankle or wrist) with velcro straps. My logic was that while walking, the added weight was to remind me to swing my right arm and my right leg. It worked really well from 2013-2017 and I recommended this to other PwP.

 

TREADMILL I supplemented this with regular walking on a treadmill at a gym that forced me to walk at constant speeds for longer periods than normal walking. The treadmill encourages consistency and concentration compared to normal walking. This is especially good for those with PD and who can afford a gym membership.

The underlying advantage is the positive impact of cardiovascular health and improved blood circulation. While the treadmill did little for my arm-swinging, the constant leg and foot movements are great for us PwP.

ARMCHAIR For those who are retired, unemployed or can't afford the gym, an armchair is useful for stretching the legs, spine and diaphragm. The chair needs to be sturdy so a camping chair is not an option. 

 

I enjoy stretching. After cycling I grip each of the chair's arms and then raise both legs straight in front of me, parallel to and as high off the floor as possible while pointing my toes up towards the ceiling for 15 counts and then down pointing towards the wall for 15 counts. Then, while still holding the chair's arms I kick outwards with each foot for at least 30 counts each. Another simple challenge is to stand-up and then sit down with a straight back for 20 counts at a time. This is a great diaphragm/tummy exercise for us PwP.

PD CYCLING The Threshold mini cycle is 35cm high and 40cm wide so it may be placed under a table for cycling and is easy to store. As it weighs just under 9kg it is relatively easy to lift onto a higher surface for cycling using one's arms. 

The mini bike mechanism - a magnetic flywheel - is quiet and has 10 levels of resistance. I am currently able to cycle for between 20 and 30 minutes daily. As I am not able to maintain balance on a saddle this mini-bike is ideal as it allows me to sit on a chair and cycle: yay! 

FIDGET SPINNER My fingers are not exercised enough so my grandchildren introduced me to the fidget spinner (⬅video demo of action). It is about five centimetres square and has three weighted circular rings that spin around a central pivot point that is perfectly balanced on central ball bearings.

I am able to spin and balance the fidget spinner on each of the fingers of my left hand but only on two fingers of my right hand (my PD started on my right side). I use this daily.

PUZZLE CUBE My grandchildren also introduced me to something similar to the cube in this picture. Its action is similar to the revolving action and problem solving function of Rubik's cube. As my fingers on the right hand are generally stiff because of inaction, such a cube used daily is very helpful. I use it with both the left and right hands and although my fingers get a little sore the exercise is great.

ELASTIC BAND Playing with a thick elastic band by getting your fingers to stretch the band - with individual fingers or all five simultaneously - is also effective when you are seated and inactive. 

Squeezing a STRESS BALL - something I also do daily - has a similar outcome.

CONCLUDING "DIAGNOSIS"

I retired in December 2017.  Relaxed and at home, I went on a diet of large helpings of PD-pity, with occasional side-dishes of self-pity till we left our inland Pretoria home to settle on the east coast in Durban, KwaZulu-Natal in March 2020. Durban is also the home of our daughter and our grandchildren. In addition, this move coincided with the start of the COVID-19 lockdown period. 

Between 2018 and 2020, during retirement, I was unable to sustain my physical activities and I became an indulgent eater and drinker. My weight shot up from 78kg to 92kg. And the PD started to get worse. Sigh! So, in Durban, in 2020, I took stock of myself and my PD diagnosis and I decided to enter a new phase.  

This is the end of Phase 2. If my story continues to draw your attention, dear reader, then I look forward to your accessing Phase 3. Stay well and safe till next time...

(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 suffer

The slings and arrows of outrageous fortune, 

Or to take arms against a sea of troubles,

And by opposing end them?"

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

Could I fight PD with a PhD?

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

Building Mental Capacity 

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

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

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

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

14 November 2023

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

Conclusion

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

The references below were accessed in July 2021.

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

(60) Blog STATS: 2020-2025

BLOG STATS 2023

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

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

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

BLOG STATS May, 2025

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

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

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

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

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

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

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

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

South Africa                                                                                                                                

5.02K

Hong Kong

3.94K

Singapore

2K

United States

815

France

324

Germany

275

Austria

191

Australia

141

Finland

122

Russia

114

China

106

United Kingdom

60

Switzerland

52

Canada

49

Poland

40

Netherlands

37

India

35

New Zealand

20

Ireland

15

Other                                                                      410                     410

(59) PD cueing revisited

Connecting dots

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

Post 42 (April 2023)"...I wondered if sequences of phrasing -- such as saying to myself "heel-toe heel-toe" -- could assist me to walk down and up the stairs in a measured manner: it did! This was my cueing, version 1.0, and I was walking confidently on stairs.
Later, I substituted the words with numbers. So, during late 2021, my "heel-toe" cue, a concrete concept to encourage my feet to move, evolved into my saying "1-2 1-2" which was more abstract. I was impressed with this adaptation to version 2.0 and believed that my using numbers (i.e. an 'abstract' representation to activate my movement) was superior to using words (i.e. a 'concrete' representation) when on the stairs." 

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

Prompting for access

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

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

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

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

So, where were cues and prompts first used?  

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

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

PD's cues

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

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

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

My cue to exit...

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

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

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

Worldwide support for PD

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

🌍🌏🌎

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

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

     

Help for me, a PwP

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

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

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

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

The Swedish National Parkinson School

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

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

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

Parkinson's UK

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

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

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

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

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

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

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

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

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

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

Practical PD self-care handout

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

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

This seven-page handout is worth printing.

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

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

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

Concluding thought...

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

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

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

Till next time, dear reader...