(30) The Good, The Bad, The Smugly: reflections

PD: The Bad

In my last post (29) I emphasised the importance of MOVEment for those of us who are parkinsed and I will do it again at the end of this post. When we're inactive for extended periods then our joints become stiffer, we lose the confidence to move and, after what is often unnecessary rest, we are in the grip of inaction. Well, that's certainly what happens to me! This thought (inaction: when an action is expected but doesn't happen) got me thinking about recent events. In post 30, I will unpack specific occurrences: firstly, after my Covid vaccinations and secondly, when I've had alcohol. 

COVID VACCINATIONS: the first occurrence of my Parkinson's Disease (PD) worsening was immediately after my first Covid vaccination. Besides having a sore arm and slight headache, I observed later that the vaccinations appeared to have protected me from severe Covid, which was good.

However, my PD symptoms also appeared to worsen, which was bad. For about a week after the vaccinations my tremors were severe. I was unable to exert partial control over the tremors as I am generally able to do.

Also, my right leg was more immobile than usual as I was dragging my right foot (NB: my PD started on the right side) when walking and I appeared to be freezing more regularly when attempting to rise from a seated position. I would literally be glued to my seat. Naturally, this generated much anxiety, resulting in more frequent freezing of such movements. I started to believe I was in a downward PD spiral and maybe my ten-year drug-free regime had been a huge mistake. 

After subsequent Covid vaccinations I observed the same results: increased tremors and temporary freezing of my right side. The Covid vaccines appeared to have triggered something that affects my conscious control over some of my PD. 

ALCOHOL: I have observed that whenever I had my favourite tipple my legs and arms would start to freeze while I was seated. The impact was the same as having a Covid vaccination: glue and seat! To ensure that I did not go to bed in this state I used to drink alcohol late in the afternoon rather than at night. My current Ayurvedic regime has made me more cautious about alcohol. I have also cut back on another favourite, my daily coffee, now opting for it weekly.

PD FALLS: in tennis, "unforced errors" are when players lose points as a result of their own, personal pressure resulting in their making errors when there's indirect opponent pressure. So, I will adapt that for PD. If I have fallen as a result of my foot being caught on a table leg then it is a "forced fall" and my fault. However, if I fall as a result of my PD causing me to be off-balance, then it is an "unforced fall" and not my fault. Whilst being parkinsed I have had an equal number of both "forced" and "unforced" falls. My last was an "unforced fall" a few weeks ago - that resulted in a sore shoulder, sore bum and a severely bruised ego - and the previous fall was 18 months before that, so 👍...

PD: The Good

After years of ignoring suggestions that I consider yoga - mainly because I am stiff, overweight and unfit - I have listened to my Ayurveda doctor who has recommended two yoga breathing exercises. In addition, my brother has recommended chair yoga. I do this chair yoga on alternate days and the two yoga breathing exercises twice daily and Dance for PD in between. The chair yoga is ideal for PD people so I am envious of the Kruger National Park giraffes below because as browsers they are able to move their necks, knees and spine in a way I cannot.

 

👌  CHAIR YOGA, specifically Gentle chair yoga has been a revelation. The 25 minute session of a range of muscle stretching and controlled breathing is becoming a powerful part of my tool box of confidence. I believe that although I am only 60% successful at completing each action, immediately after completing a chair yoga session I have had consistently greater success and confidence with the following: walking; putting on my sandals; rising from a seated to a standing position; or turning onto my side in bed. When I am unable to execute any of these four actions, what follows is freezing, tremors and unnecessary anxiety. And freezing, tremors and anxiety should be experienced as little as possible when one has PD. 

👌  YOGA BREATHING EXERCISE: the alternate nostril breathing technique is useful - if you are curious, then the short video link provides a brief introduction. Alternate nostril breathing can lower stress and improve your lung capacity. Therefore, your oxygen intake increases as does the amount of air exhaled. Breathing in and out through the nose is generally healthier than inhaling/exhaling through the mouth. 

PD: The Smugly

I have become unashamedly smug about the following four focus points in my life so I will share them.

PHYSICAL EXERCISE: my current walking action is my default stance of slightly bent knees and a slight stoop (no, dear reader, not a doorstep or threshold). The chair yoga appears to be correcting this for a few hours after exercising, so I am hopeful. I believe the yoga breathing is part of a long term plan to relax and assist my nervous system. All these are attempts to counter the effects of PD. Wish me luck!

HYDRATION: since my prostate reduction surgery in May 2021 that allowed me to stop taking two chronic medications (yay!) and weaning myself off regular coffee and alcohol I am drinking a lot more water (yay!).

MENTAL EXERCISE: reading, doing word games and crosswords as well as writing these posts - this is my 30th post (yay!) - has kept me sane and mentally fit. 

COMMUNICATION: I try to stay in touch with family (mostly in Durban), friends and acquaintances (in the country and abroad) because their presence is present. What a gift.  

Move it!

In the animated movie, Madagascar, there's a song called "I like to move it..." - in keeping with my present drive here's a YouTube video clip to make us smile. Till next time, dear reader...

(29) PD: not rooted to the spot

Stand tall and walk tall

I took this picture of a tree in the northern Drakensberg in December 2021. I was fascinated with its sideways growth compared to other trees in the area. Plants respond to gravity and so, generally, roots grow downwards and stems grow upwards. However, I am guessing that constant winds sweeping across the mountain, temperature shifts and the altitude could have resulted in its angle. 

Accordingly, dear reader, many people live relatively normal lives till they are eighty years old, unless they have Parkinson's Disease (PD). This tree reminds me of someone with poor posture and Parkinson's Disease (PD) but who is still trying to stand tall. Like me! 

Tips to take away

Until 2015 I used to walk regularly and was conscious of staying reasonably fit and healthy. Prior to that I used to do power walking and enjoyed it. Then my body's "visitor" (a.k.a. PD) started to make its presence felt and I started to slack off, slow down and lack interest. This is probably happening to many of us parkinsed people. 

The tree in the picture above is alone at the top of this slope. There are no other trees with which to share chemicals or signals or to provide support. Interestingly, there is growing evidence that such exchanges between trees exist. I am reminded of the fact that there is no face-to-face support group for parkinsed people in the Durban area. So, I am on my own. Fortunately, I belong to an online support group based in Gauteng that is called Movement Disorders Support (MDS). 

There has been significant growth in the MDS membership that has provided a steady stream of useful links. For instance, through them I have discovered Nordic Walking, a useful walking technique for those with PD, using two hiking poles or sticks. The walking action is best done on a solid surface. I have tried this on grass - I was not impressed with my progress - so, a hard surface is better. Essentially one is emulating a natural walking action and gradually introducing the poles to support and propel oneself forward. 

Something that has also helped is regularly checking my posture in a full length mirror. I'm constantly embarrassed by my slight stoop, so, I try to stand tall and constantly remind myself of this posture. Since last month, the bent tree in the Drakensberg has become another reminder of my stoop. Sorry, tree... 

Make an Obvious, Visible Effort = MOVE

We parkinsed people need to move every day, otherwise, we become stiff and immobile. So, last year I started a daily three-minute routine of doing a gradual stretch of my right arm and right shoulder, two parts of my body that struggle to move. I raise my right arm twenty centimetres higher each time starting with floor level and aiming for the ceiling. This is similar to the movement of the second hand on a clock, where I slowly raise my outstretched hand starting with the 6 position (floor level), then 7 and ending with the 12 (the ceiling). This stiffness is another sign of PD and started five years ago (the first signs of PD appeared in my right thigh ten years ago). Often, I used to have right shoulder discomfort but, since my "clock" regime, that discomfort has become a rarity. Yay! 

Last year I started to experience leg cramps at night in bed when attempting to turn onto my side. I was advised to consider doing yoga. I ignored the suggestion because I am overweight and unfit. Standing and stretching would be too much of a challenge due to my growing lack of confidence and poor balance. A few months ago my brother shared a yoga website with me and it led to my exploring and doing the 25- minute Gentle Chair Yoga Routine weekly. Now I'm challenging myself thrice a week. There are many chair yoga sites on the internet. 

When I lived in Gauteng I used to attend a weekly Dance for Parkinson's (DfP) class with a qualified instructor. The DfP classes originated in New York city. The interpersonal communication during and after classes led to some post-class socialising. Unfortunately, retiring to KwaZulu-Natal put an end to that face-to-face activity. Also, the nearest face-to-face class is at Howick, more than an hour's drive away. So, I have opted for the Covid approach and found these classes online. Local DfP online classes may be found at Dance for Parkinson's South Africa. The New York City DfP site is also available online.

The need to be moving everyday and also checking my posture in the mirror got me thinking about the importance of seeing what I am doing in order to reinforce the action. So, my 2022 focus is the acronym for Make an Obvious, Visible Effort = MOVE ! The Obvious is to ensure I understand the nature and angle of the movement in which I am engaged. The Visible is to ensure that the movements are as exaggerated as possible, especially when it involves my right hand or right leg. This works for me.

Concluding thoughts

The fact that brain plasticity exists is a comforting thought, as I described in post 28. It means that parkinsed people are able to make their brains adapt to deal with the presence of the "visitor". It requires a shift in thinking, a change in lifestyle and a new set of goals. 

Trees have some qualities that we should emulate, such as retaining connections with family and friends. I am grateful for the growing readership of my blog that shows many of you out there, dear readers, are interested in my structured rambling. Remember, if you have PD or are ageing, continue to MOVE . Till next time.

   

(28) NEUROPLASTICITY & MY PD

RECAP In Post 27, I shared some ideas around my freezing and subsequent use of trigger words to initiate internal cueing to assist faltering movement. Many of us with Parkinson's Disease (PD) are reliant on such a strategy to attempt to kickstart dormant motor learning in order to make our limbs move. One example of re-initiating motor learning is overcoming my difficulty - as a PD person - of moving from a seated to a standing position, as illustrated below.

In Post 27, I also focussed on strategies for the re-execution of movement. What is interesting is that while this cueing strategy is supported by the combined effort of a body's muscular, skeletal and nervous systems, I've ignored the fact that the brain has an unfathomable capacity to adapt under extreme circumstances. Let's briefly explore neuroplasticity and my PD.

 

PD: I'm the dope with depleted dopamine

I have PD. I have been told this condition exists because of dwindling levels of dopamine, a complex chemical in my brain. This 'dwindling' has probably occurred over an extended period of time. If that's so, then it could have been triggered by a traumatic brain injury when I was a child (1956) and other specific traumas I can pinpoint during my adult life (1999, 2007, 2012).

From what I've read, dopamine is manufactured in my brain and functions as a neurotransmitter to send messages across my nervous system to deal mostly with movement. For a brief, scientific explanation of dopamine, see the 2 minute video. Besides being a chemical messenger, dopamine is a hormone: it plays a role in mediating rewards in my brain, both as the "excitatory" hormone responsible for my feel-good times, as well as the "inhibitory" type. But it also plays a role in regulating chronic pain, amongst a host of other functions. So, dopamine is no dope!    

What I've learnt about my PD since I retired end-2017 is that, firstly, I have a movement disorder that plays havoc with my muscle confidence. This disorder, coupled with my tremors, instills the constant belief that I need to rest. As a result, I rest more than is required leaving my muscles over-rested and underused. So, I am unable to do simple tasks, although my muscular, skeletal and nervous systems are functional. 

Secondly, being over-rested means my muscle memory converts to muscle-forgetory (see Posts 6, 15 & 16)  making me believe I am incapable of moving "normally". This appears to be a powerful function of my brain, namely, to adjust the body's functions to suit what is the strongest. When my right side started weakening due to the impact of PD my left-hand automatically took over (see Post 8 regarding dexterity) and dominated certain right-hand functions. 

And thirdly, because my nervous system controls my sense of temperature, as a parkinsed person, I am now more sensitive to temperature shifts, both hot and cold. In Post 9 I referred to "trevers" i.e., tremors + shivers, when it gets cold. 

So if my muscular, skeletal and nervous systems are okay, then what is the problem? Probably the decreasing amount of dopamine in my Substantia Nigra (see 2 minute video). Some of this is speculation on my part, so in keeping with my speculative stance I will look at the positives such as my shifting dexterity and cueing to re-initiate my motor learning. Besides the three systems just mentioned, dear reader, let's not forget the brain and its plasticity. 

What is neuroplasticity?

There was a time when scientists believed that the creation of new neurons (i.e. neurogenesis) stopped shortly after birth but that has been proved to be incorrect. The notion of neuroplasticity - also called brain plasticity - is based on evidence first recorded by a Polish neurophysiologist, Jerzy Konorsky, in 1948. He wondered if it was possible to alter existing neural connections in the brain through conditioning (naturally, Skinner and Pavlov were also in this think tank). Later it emerged that new experiences linked to change could influence the brain to reorganise most neural pathways and even generate new ones throughout one's life. Neuroplasticity is a combination of the essence of the nervous system (i.e. neurons) and the brain's capacity to be remoulded (i.e. plasticity) in the face of an individual's challenges. 

One example of 'remoulding' is the ability of a musician such as Ray Charles to excel at tasks generally achievable by a sighted person. He was not born blind and his musical ability as a singer and pianist was superior to that of many of his sighted contemporaries. It could be said that he was able "to perform non-visual tasks better than those with sight". I had the privilege of attending one of his live performances in the nineties and his musical performance together with his piano stool antics made it unforgettable! 

Another example is the phenomenon of phantom limbs where an amputated limb still appears to exist in the mind of the amputee. This supports speculation that every person's brain contains the equivalent of a detailed diagram of all bodily functions and accompanying support systems to sustain the idea of neuroplasticity. Below is an illustration of brain plasticity. 

How experience changes brain plasticity

Regarding the principle of plasticity, it is possible that my advanced internal cueing leans towards functional plasticity. According to Psychology Today plasticity makes it "possible to change dysfunctional patterns of thinking and behaving and to develop new mindsets, new memories, new skills, and new abilities". 

A brief deviation: my advanced cueing for dressing, walking and climbing stairs would be similar to creating a learning strategy called a mnemonic. This allows one to remember a series of words or names in a specific order. For instance, when trying to remember the colours of the rainbow in order, I remember this mnemonic: Richard Of York Goes Battling In Vain. Each first letter is the first letter of word representing a colour, namely red, orange, yellow, green, blue, indigo, violet. The silly sentence about Richard is a primary trigger that takes me to the source, the actual colours. 

This seemingly long process is, in my experience, how successful remembering can occur. So, my shift from saying "toe-toe" to counting from 1-6 when climbing six stairs is my way of creating a sense of continuity (from a green light to amber - see Post 27) in my stilted movement. Maybe, the fact that it works is my brain telling me it has accepted an amended cue and indicating that a form of learning has taken place. Hmm...evidence of plasticity?   

This perspective of neuroplasticity is an enlightening one for me as a parkinsed person. I have scratched the surface of this phenomenon to provide food for thought, dear reader. There is also recent research on exercising and neuroplasticity that I have included below to further whet your appetite. 

Neuroplasticity and exercise: more food for thought...

Research published in 2019 found that the impact of aerobic exercise resulted in positive change in the brain plasticity of subjects with PD (see EXPANd trial article no. 2 in Resources below). The article focuses on two groups, (1) a HiBalance and (2) a HiCommunication group. Their broad focus area was on exercise as a form of non-medical intervention for those with PD, particularly in the light of the unpredictable nature of current pharmaceutical "remedies". 

Another strand of research also published in 2019 is on healthy subjects without PD and the impact of extreme aerobic exercise on their brain plasticity (see "Exercise-Induced Neuroplasticity..." article no. 1 below). It focuses on exercising among healthy individuals and indicates that "fit individuals show greater neuroplasticity induction than unfit individuals". 

Happy Holidays, dear reader, and thank you for visiting this blog. Till we connect in 2022.

Resources

Neuroscience: click on desired link & when site opens scroll down for short video.

1. Know your brain: Substantia Nigra
2. 2 minute video: Dopamine
3. 2 minute video: Parkinson's Disease
4. 2 minute video: Huntington's Disease
5. 2 minute video: Caffeine (vs adenosine)  
6. 2 minute video: Reward system

 Articles

1. This journal article focuses on the effect of exercise on healthy individuals without PD. If you're bored, then only read the Abstract (at the beginning) and the Limitations and Conclusion paragraphs (at the end). "Exercise-induced neuroplasticity: a Mechanistic Model and Prospects for Promoting Plasticity." by El-Sayes et.al. (2019). Available as a PDF.
2. This journal article focuses on individuals with PD: "The EXPANd trial: effects of exercise and exploring neuroplastic changes in people with Parkinson's disease: a study protocol for a double- blinded randomized controlled trial. By Franzén, et.al." (2019). Available as a PDF. 
3. How our brain adapts to impairment: "Loss of Sight and Enhanced Hearing: a Neural Picture." 
4. A blog site for PD people like me: "Fighting Parkinson's Drug Free."
5. A useful easy read on brain plasticity in a South African publication "Psychology Today."  
6. What is neuroplasticity? Positive Psychology
7. This chapter: Neuroplasticity after traumatic Brain Injury by Su, Veeravagu & Grant, focuses on traumatic brain injury and neuroplasticity. If you're bored then just read the introductory paragraphs, the section on Neuroplasticity and the Conclusion.

(27) PD robot: GREEN (go); RED (find AMBER)...WTF!

NB (27) above indicates the numerical order

Lights, action...freeze frame!

During the past two months four water valves in my residential area burst resulting in our being without water for up to three days at a time. This might continue as we are in an old part of Durban with crumbling infrastructure (hmm...like that of my body). I had a number of freezing incidents during these periods. For instance, once, I was unable to get out of a recliner, something that had never happened before. Also, in bed I have been struggling to turn onto my side. I assumed it was the PD but maybe my para-olympic mind-games had begun again!  

My immobility may have been because missing a daily shower resulted in missing my daily stretching routines in the shower. We know the aged should be active for as long as possible, daily, otherwise, their muscles will stop responding to requests to move and become sluggish. It is likely that my muscles were unable to respond (A) because of my inactivity and (B) because of my PD. Or maybe (C) I need to have regular physiotherapy or biokinetics.

Further analysis of my freezing problem, led to my developing an amended set of previously reported Parkinson's Disease (PD) strategies called cueing that I will share later.

PD: advanced cueing & triggers 

Let's start with an analogy. Small parts of the USA between the 1920s and 1940s, had two way traffic lights, that were red and green only, as illustrated in the picture below. These were suspended above a few major city intersections to control the flow of pedestrians and traffic. An amber, third light was only introduced in the 1950s. 

In the context of PD, stopping an action should be discouraged. If the equivalent of red lights are our reality, then we should encourage thinking of amber lights to introduce the possibility of further action.

  

Recently, I discovered that what I called 'internal/remedial messaging' (Post 17) is referred to by neurologists as "internal cueing". So, I will adapt. "Internal cueing" is used, for instance, by athletes to talk to and to understand micro-movements of their limbs by making actions transparent and visible in their minds. This is to allow them and their coaches to improve their performance. 

 

Parkinsed people can also use this technique of cueing to address their faltering movement. But this requires us to be able to isolate specific actions involved and then to break them down into micro- movements. Only then can one assign specific words, phrases or even tunes - all regarded as cues - to initiate and to execute these actions. Isolating and identifying specific micro-actions would be like asking you, right now, to find the animal in the picture below: focus and you will find it. (Got it?)   

My own system of cueing was based on using single action words to assist the limbs to move. For example, when pulling on pants I would say "slide" and then "slip" to visually picture my hands sliding my pants up my legs and then slipping my thumbs into the waistband. Or walking up flights of stairs I would say "toe" when putting my first foot down on a stair and "toe" again when moving the other foot up to the next stair. After my recent immobility scare (courtesy of the water outages) I amended my single cue to a series of multiple cues and associated movements. 

My amended cueing strategy is based on the idea that a single cue triggering a single movement is like going from a green to a red light. Saying "toe" only takes me up one stair. However, counting from "one to six" when ascending a single flight of six stairs propels me up one whole flight and then I can start at "one" again for the second flight without saying "toe" six times. So, my counting is a substitute for repeating "toe-toe" and similar to using words that trigger actions. Embedded in such triggers are meanings associated with specific series' of actions. 

Advanced cueing: as easy as 1,2,3,4

Let's unpack specific conditions and my understanding of freezing. In a standard flow chart there are a set of "if-yes-then" and "if-no-then" conditions controlling a process. This is aligned to a definitive red and green robot or traffic light analogy where flow is either on or off. There is no room for the equivalent of an amber light. So, let us consider the idea of a green and amber traffic light.

Green (go) and amber (approach with caution) is more apt to my understanding of PD as it introduces the possibility of movement and flow. So for me as a PD person, initiating movement may be regarded as a set of "when-I-then-I" conditions. The green and red traffic light represents a start-stop implementation of a single action where a blockage in the pathway (dopamine depletion?) results in my freezing. But green (go) and amber (approach with caution) allows me to confront the freezing. 

EXAMPLE When attempting to stand up from a seated position I used to have to repeat the action of getting up many times before being able to stand. It must have looked Chaplinesque. It used to be a single-stage failed action. But, introducing a green and amber traffic light to represent the when-I-then-I system of internal cueing, encourages a sustained multi-stage motion for me as a parkinsed person. 

ACTION So, when-I wish to stand (1) then-I push my legs forward and straighten my knees, (2) then-I push myself away from the seated position and shift my weight forward, (3) simultaneously ensuring my head and neck are as far forward as possible and at right angles to my torso (so that I do not fall back into my seat) and (4) then-I stand up. Breaking the action down into four stages ensures me a 90% success rate of standing and not falling back into my seat. The critical point is that the trigger words are 1,2,3,4 and not a series of words or phrases. 

And what is fascinating, is that 1,2,3,4 also works as my cue for climbing stairs: a revelation! And so far it has been effective!! I should count my blessings...

Next post

Constantly adapting to and creating new habits is central to the brain's ability to reorganise and rebuild synaptic ability, i.e. neuroplasticity! My growing ability to regenerate cues and multi-action movements are based on the brain's ability to relearn. And it needs a whole post, so I promise to pay attention to neuroplasticity in post 28. 

Some Resources

• A strategy for PD balance when standing and turning is spotting (Post 6).
• Article on PD human-computer interaction: High-accuracy detection of early Parkinson's Disease...while typing.
• An early detection site for PD involving your keyboard and mouse is at Key Sense - it is only for those who've not been diagnosed with PD.

(26) PD: who's the boss?

NB (26) above indicates the latest post & numerical order

Recycling my memory?

Years ago, I needed to upgrade the memory of my desktop PC. So, I bought an upgraded module with greater memory and then sold the old one to someone with a similar machine and motherboard: sorted. As a person living with Parkinson's Disease (PD) I wish I could recycle my brain and memory like I did with my PC without having to undergo something invasive, such as deep brain stimulation (DBS). 

If you have read my earlier blog posts you will know that I chose to avoid chronic PD medication since I was diagnosed in 2013. Subsequently, I have focused on alternative approaches and discovered strategies that help my gait, balance and mindset. All of these strategies together with my personal theories, appear in earlier posts. Today I will revisit the idea of retraining my brain. 

Next time, in post 27, I will attempt to unpack neuroplasticity and how this might relate to me and others with PD. (I've included this link by way of preparation as there's a short, explanatory animation).

Train a brain and gain

Srini Pillay wrote a piece in the Harvard Business Review (HBR, June 2017) titled:  The ways your brain manages overload, and how to improve them. To support these 'ways' he reduces the brain's sophisticated roles and functions to that of machines with which we are familiar at home and the office and provides six principles to improve a brain's functions. An excerpt with embedded links follows:

"...the human brain - your brain - is metaphorically endowed with a vacuum cleaner that sucks up information; a container for short-term memory; a blender for integrating information; a memory bank for storing long-term information; a garbage disposal for getting rid of information; and a recycling machine extraordinaire. Using each of these functions effectively is critical if one wants to manage information overload..."

My brain - and yours, dear reader - has learnt to carry out sophisticated, overtly physical tasks such as walking, driving, playing sport, etc. as well as overtly mental tasks such as teaching and learning, constructing theories, completing crosswords, etc. over many years. In fact, since our birth. However, when Parkinson's Disease (PD) hijacked my system it stole my confidence, my ability to move and sometimes my ability to think. In my opinion, my hijacked PD brain is in a constant state of overload! 

I wish to focus on Pillay's (2017) third principle in his article, regarding selective filtering. With reference to one's "placing a filter on the [short-term memory] container", he says that a short-term memory container is like a mug of ideas where space is limited. He suggests we develop a "proactive and reactive" selection of daily information so our mugs are not filled up unnecessarily. 

So, according to Pillay (2017), information selection in a "reactive" manner is when there is "TMI" ("Too much information") resulting in our talking to our brains and telling ourselves to ignore it. I suggest that such talking is similar to the notion of 'cueing' that I have described earlier. As a consequence, a "proactive" selection of information is when we actually engage in "preparing" our brain, laying the foundation, for instance, to ignore "TMI". To illustrate, when we're in a meeting, we can switch off our mobiles or select a "do not disturb" function to selectively remove "TMI" so there's less distraction. 

For the past five years I have been actively composing cues for myself and then consciously executing them when required. I have been laying new foundations for my basic functions of walking and dressing. This "cueing" could be similar to "reactive" information selection. 

Selective filtering: "reactive" info selection

MY BIG QUESTION: Why does existing use of old muscle memory - it's worked for nearly seventy years - make me freeze during a familiar action, such as putting on sandals or getting up from a chair, yet, my reactive response or cueing bypasses the now old muscle memory and I am able to complete those actions? And, remember, I am not taking any PD medication.   

I am aware that driving a car is regarded as part of one's implicit or unconscious memory and represents an action that is not consciously recalled. However, also on this list is dressing and walking. I do not understand how and where my reactive approach has allowed me to bypass the impact of  Parkinson's and make parts of my dressing and walking a conscious recall. I am reasonably confident a neurologist would provide some theoretical answer to clear up my confusion. 

And one possible answer, dear reader,  is the neuroplasticity of my brain. I will ponder this imponderable - like Pinky and the Brain - and attempt a response in the next post. 

For those inclined: finely-tuned brains

Playing a musical instrument is supposed to be the perfect stimulant for those with PD. For the past 5 years PD has reduced me to being a listener. 

My favourite overseas jazz band is an American group called Fourplay. In the link below they perform live in Japan: Fourplay live in Tokyo (2013). Act 1 (the first 35 minutes) is the band playing on their own and is for jazz lovers. Act 11 is them performing for about an hour with the New Japan Philharmonic orchestra, combining classical and jazz. Quite a multitasking accomplishment for the conductor Taizo Takemoto, the Fourplay composers (Bob James, Harvey Mason) and all the musicians. 

Till next time, stay safe.

(25) PD misdiagnosis: Robin Williams & LBD "terrorism"

NB (25) above indicates the latest post & numerical order

To be or not to be...

I started writing this blog after watching the movie Awakenings (1990) a few times in 2019. As a parkinsed person I was fascinated by the trial and error approach to the treatment of Parkinson's Disease (PD) and the possible consequences due to PD medication. Subsequently, a review of that movie and a BBC documentary about the GDNF trial also involving a PD remedy became an important part of two early posts (3 and 4) of this blog. 

The movie Awakenings is about patients in a psychiatric hospital in New York who appear to be immobile and not responsive. They are mostly victims of encephalytis lethargica, a European epidemic that might have started during the early 1500s but only identified and labelled in the early 1900s. This neurological syndrome presented itself in two phases and as the latter clinical phase resembled PD, a PD drug was used on the patients. Part of my original post is below.

"The movie starts with a young boy gradually becoming dysfunctional and one sees the impact on his life as a teenager. Fast-forward about 50 years and that child is one of a group of adults, played by Robert De Niro, who appears to be displaying PD-like symptoms in a psychiatric hospital. In an attempt to bring him and others out of their catatonic state, an experimental drug called L-dopa is prescribed by Dr Sayer, played by Robin Williams, who has already made startling observations of some of his patients. Although L-dopa was developed specifically for PD, the symptoms presented by patients with encephalitis lethargica are similar, hence the doctor's decision to prescribe it. Dr Sayer, prior to joining the psychiatric hospital, was a medical doctor and serious researcher..." 

Excerpt, Parkinson's: to be or not to be, (3) PD experiment in a movie, April 2020.

So, while encephalytis patients were 'displaying PD-like symptoms' they did not have PD. There was no misdiagnosis but, I suppose, reasonable assumptions made regarding the symptoms and possible treatment. There was a measure of effectiveness in prescribing L-Dopa but it came at the expense of other symptoms. PD is a complex neurological disease that has kept medical science guessing in the way that Covid-19 is doing right now. Sadly, Dr Sayer aka Robin Williams suffered the same fate as his patients in the movie: a misdiagnosis. A real life tragedy!  

Robin Williams' shadow of his former self

It is tragic that neurologists were unable to diagnose Robin Williams' symptoms accurately, because of the complex nature of Lewy Body Dementia (LBD). LBD is a progressive dementia that causes problems with mental abilities because of microscopic deposits in the brain that gradually disrupt its functioning. According to his wife, Susan Schneider Williams (in picture above), in a journal article published in Neurology, entitled The terrorist inside my husband's brain (September 2016) two years after his death, his suicide had been "at the end of an intense, confusing and relatively swift persecution at the hand of this disease's symptoms...". It was only when she received the coroner's report three months after his death, that she knew Robin had not had PD as diagnosed, but LBD. She states in the article that, according to that coroner, "almost no neurons were free of Lewy Bodies throughout the entire brain and brainstem".       

LBD, according to the NIH Medline Plus magazine, impacts on movement and sleep as well as creating hallucinations. It impacts severely on one's judgement, one's mental speed, thinking on one's feet and one's understanding. One goes from being rational and functional to being irrational and dysfunctional as a result of the disruption caused by the microscopic clumping of a protein in granular form. As a result, one's cognitive ability literally seeps out of one's brain. The illustration below depicts the seepage.  

Illustration of LBD, courtesy of NIH MedLine Plus magazine

Film roles versus Life's roles

It is significant that during Robin Williams' life he played the roles of alternative and critical thinking professionals. Each role portrayed characters in control of their thinking and their actions, although often in opposition to what would have been regarded as conventional. Some roles depicting this are that of a psychiatrist (Good Will Hunting), a physician (Patch Adams), a neurologist (Awakenings) an absent minded professor (Flubber) a Russian medical specialist (Nine Months) and a teacher (Dead Poets Society). In these roles, his characters generally sought an alternative approach to problem solving and resulted in some form of character building. 

In real life, in the few years leading up to his suicide on 11 August 2014, doctors and neurologists were unable to diagnose Robin's symptoms with any degree of certainty. They were unable to provide a 'Patch Adams' style bandaid to halt the mental retrogression. The tremors, insomnia and constipation, amongst other symptoms, led the medical specialists to believe that he had PD, so PD medication was prescribed. If this had been a scripted movie then the character Robin Williams should have survived. But he he couldn't. Susan recounts in her journal article "The massive proliferation of Lewy Bodies throughout his brain had done so much damage to his neurotransmitters...that he had chemical warfare in his brain." Terrorists had struck.

In the months leading to his death, his wife Susan describes in her article how he suffered with "paranoia, delusions...insomnia, memory and high cortisol levels...". Uncharacteristically, during a movie shoot of Night at the Museum 3 he struggled to remember his lines. He wished he was able to start life all over and once said to Susan "I just want to reboot my brain." However, the LBD terrorists had already infiltrated and taken his brain hostage...there was no turning back the clock.

Dear reader, I have been moved by Susan Schneider's article and if you know someone with PD, I recommend you read it as there are some similarities. Also, there are American and Australian documentaries on Robin Williams available online but two that stand out and are informative are these:

• Robin Williams: come inside my mind (2018); 
• Robin's Wish: a conversation about Lewy Body Dementia (2020)

Till next time. Stay safe.

(24) Movement orders: so, who was James Parkinson?

NB (24) above indicates the latest post & numerical order

"DIS" A MOVEMENT ORDER 

Parkinson's Disease (PD) is well known for impacting on one's movement. As we know, the specific term movement disorder, may be described as a neurological condition that affects voluntary muscles either by retarding or speeding up movement. The following is a list of some movement disorders:

• Ataxia;
• Chorea;
• Dystonia;
• Tourette Syndrome;
• Progressive supranuclear palsy;
• Tremors/Essential Tremor;
• Dyskinesia;
• Restless Legs Syndrome;
• PD;
• Huntington's Disease (HD) and other movement disorders (click on website above for some detail). 

The above illustration depicting hand tremors, copied from the news-medical.net article (cited above), captures the essence of my PD as a movement disorder. When I am tense or cold or anxious or watching TV my PD generates resting tremors. Right now, end-July 2021, because of the cold (Durban's overnight temperature has hovered between 10℃ and 14℃) I spend a large part of my days and nights "trevering". I first introduced this and another combined concept in Post 9: shivering + tremors = "trevers".

Let me digress, briefly, to examine the word 'tremor' and some related synonyms. For instance, if the earth had an advanced level of PD we'd have one continuous set of foreshocks, shocks and aftershocks all rolled into one, deadly quake. The action of a shiver is often the result of one being cold or sick or in shock. And "shiver me timbers", an expression attributed to assumed pirate-speak, is associated with a pirate expressing mock surprise. A sinister use of the term is associated with land mines and other explosive devices that are triggered by the activation of a "trembler-switch". The term quiver, associated with both the action of the hands and the voice, has a botanical link too.

In the Northern Cape's Namaqualand, there is a tree belonging to the succulent family and resembling a miniature Baobab in shape and structure, called a quiver tree or "kokerboom" in Afrikaans. The word "koker" in Afrikaans refers to a cylindrical container, also a quiver for arrows and has little to do with a resting tremor in PD. Apparently, the San people used the branches to make quivers for their arrows. The quiver tree picture below was taken in 2014 at the Goegab Nature Reserve near Springbok. Had it been a windy day when the photo was taken, quivering branches may have resembled hand tremors 😃.

Movement disorders and variations of the word "tremor" are some of the many that scratch the surface of the notion of being parkinsed. Let's examine the notion of "shaking" and why my affliction is called "Parkinson's Disease".

"DAT'S" A MOVEMENT DISORDER

An internet search will reveal a lot about PD as a movement disorder and present lists of symptoms, stages and various forms of PD treatments but speculate about its causes. So, I have selected James Parkinson's original, speculative essay a few other articles - they appear in the list of references - as a starting point to inform our mutual interest in PD. It is a convenience sample.

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 (slow movement) 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 consequently
• 1825-1893: Jean-Martin Charcot recommends this malady be named Parkinson's Disease.

I am 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 disclaimer in the essay is that "mere conjecture takes the place of experiment; and, that analogy is the substitute for anatomical examination,"(p.223). His revelation is that "the disease, ... has not yet obtained a place in the classification of nosologists;" (p.223), nosology being a branch of medicine dealing 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. He suggests that "tremor has been adopted, as a genus, by almost every nosologist,...but always unmarked...by such characters as would embrace this disease." (p.224). The essay is his attempt at marking what he believed had been 'unmarked'. 

The introduction and overview he presents in the essay under the section "History" (pp.224-225) is a real-life but morbid description of the "inroads of this malady" (p.224) we now call Parkinson's Disease. I found this section disturbing to read. The six case studies of men between 50 and 65 years of age are presented between pp. 225-227 of his essay. Each one describes to a greater or lesser extent, something with which parkinsed persons can clearly identify. The essay, therefore, describes varying degrees of stance, gait and tremor, the elimination of other possible medical issues and variables that make symptoms worse. He concludes by distinguishing his observations from other diseases. This is what probably made his observations insightful for other neurologists 300 years ago.    

Obviously, 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. 

And there you have it, dear reader, the brilliant James Parkinson: social reformer, palaeontologist and medical professional! Till next time.

  

SOME REFERENCES

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.

(23) The PD pharmaceutical tightrope: a delicate balance

NB (23) above indicates the latest post & numerical order

PD + BPH + HYPOTENSION = DiZzInEsS? 

What is evidence? One answer to that question is that evidence is information gleaned as a result of an investigation or a series of observations. For instance, I was diagnosed with Parkinson's Disease (PD) in 2013. Since then, almost daily, I have had dizzy spells that have been debilitating and even confined me to bed for a few hours. Naturally, I assumed this was the result of my having PD. Nine years later, in May 2021, I have been able to revisit that deduction based on new evidence. The bottom line is that, in my case as a PD-drug-free person, the dizziness was not induced by my PD but by side-effects of chronic medication! (If you are curious about specific medication names, dear reader, please e-mail <ari.naidoo@gmail.com>.)(And thanks, SN, for suggesting an amendment.)

I have had an enlarged prostate (a.k.a. benign prostatic hyperplasia or BPH) since 2004 and have been treated by three different urologists. In 2015 my then urologist suggested I supplement the morning prostate medication with another at night and I did. Recently, my prostate has been misbehaving, resulting in my needing a catheter in December 2019. So, on 18 May 2021, I had a surgical procedure to reduce the size of my prostate gland by about 70%. 

It has been one month and I am not completely back to "normal" after the surgery, but, there have been other major benefits. Firstly, since 18 May, I am permanently off the two chronic meds treating the BPH: Yay! Secondly, since 18 May my dizzy spells have stopped completely: Yay! That suggests that a combination of two chronic meds for BPH resulted in the dizzy spells. What else could it have been? I am still on a morning chronic med for hypertension so that could not have been the cause of the dizziness. Pharmaceutically, there was an indelicate balance in my meds, in stark contrast with the perfect balance of this baby grey loerie below. 

A published side effect and precaution for one of the BPH meds I have stopped taking is that "orthostatic hypotension (postural hypotension, dizziness and vertigo) may occur...". Personally, I will still trust a medical specialist or a GP but will be extra cautious before any more pill-popping. Inserts in medicine containers are quite clear and also present a sort of disclaimer, I suppose.

The above observations should be read in the context of my being generally cautious when taking any medication. This has been an underlying thread woven into my blog, another being my constant search for alternative approaches to ease the plight of being parkinsed.

Diagnosing PD: a standard procedure?

In 2013 in Gauteng, I produced the results of an MRI scan and filled out a long self-diagnosis form and was asked to do a few physical exercises in front of the neurologist. At the end of that he pronounced that I had had PD and gave me a script for medication. I decided then to ignore the script and look for alternative approaches, all of which are in this blog's posts. 

After retiring to KwaZulu-Natal in 2020 I eventually found a new general practitioner (GP) in 2021 who recommended a urologist and a neurologist. Upon the GP discovering I had been a drug-free PD sufferer since diagnosis in 2013, he expressed surprise and was impressed with my courage. Specifically, he commented on the positive gains made for nearly ten years of being PD-drug-free. However, he also expressed concern regarding the dangers of my lack of balance and arranged for me to see a senior neurologist. 

On the appointed day, the senior neurologist spent a long time gathering historical and personal data and did some physical resistance exercises with me. He then asked me what PD meds I was on. When I answered "none" he expressed dismay and wanted to know why I had avoided PD meds. He then prescribed a drug that had all the side-effects I had been trying to avoid, for example, nausea, dizziness and hallucinations. Secondly, I had to avoid certain foods when taking it. Finally the effect of the drug lasted about four hours so I would need at least four doses daily and that dosage and drug strength could be increased over time. In the final analysis, as a non-medical person, it appeared he was a neurologist gathering data to inform an understanding of PD rather than treating a patient trying to cope with PD. I was disappointed. Déjà vu!

A new sense of balance

Since 2012 when I first noticed my leg tremor, I have been trying to deal with my symptoms in creative ways, as indicated throughout this blog. So, after the last neurologist's diagnosis a month ago, I have decided to capitalise on my gains of being PD-drug-free and to try an alternative that I will share in another post: an Ayurveda approach to PD. We have tried this approach to an ailment in the past and the result was most impressive.

I must also acknowledge that a few medical practitioners in Durban were cynical when I indicated that I had had constructive results from neurolaser treatment (SEE posts 10, 11 & 13). They laughed it off as non-scientific as there were no large scale clinical trial results and what I had probably experienced was simply a placebo effect: I may have experienced a benefit but there was no medical effect. As the recipient of the laser treatment I can vouch for its impact so why do I need the evidence of a large scale clinical trial? Am I just stubborn, dear reader, or trying to justify the money spent on the laser treatment? Hmmm... 

In conclusion, I need to express my deep admiration for all those of you on a PD medication regime, especially my 2018/2019 friends from the Dance for Parkinson's class in Pretoria. All of you have more courage than I have. I miss the camaraderie of the Pretoria group even though not everyone there is on PD meds. Till next time, dear reader.

(22) PD: generating and removing masks

NB (22) above indicates the latest post & numerical order

Masks and hypomimia with Parkinson's

During my thirteen years in the theatre, I spent many hours wearing masks, stage makeup and costumes to create characters. With the help of skilled directors and voice coaches I was also able to create fictional characters using mannerisms and accents that were credible. The sophisticated masks we "wore" - either physical or otherwise - encouraged audiences to follow the characters' stories in the context of the play being staged. It is interesting to note that there are similarities as well as differences between the theatrical mask and the expressionless face often associated with a Parkinson's Disease (PD) sufferer. And a mime.

The theatrical mask lasts the duration of the rehearsals and performance, and with each successive performance the character becomes easier to portray. The thing that made a character come alive, for instance a costume, a manner of walking or talking, would make me also believe in the illusion I was creating as that character. A loss of motor control especially in the face of a PD sufferer is referred to as facial masking or hypomimia. It is assumed that the general loss of motor control, where parkinsed persons start walking and talking more slowly, has an impact on their faces. That results in an  expressionless or mask-like appearance. 

The mask I have started wearing the past few years is for my current role in a tragedy, Days in the Life of a PD Sufferer 😆. It has become my default look when I am not engaging verbally with people. In Shakespeare's comedy, A Midsummer Night's Dream, a character called Nick Bottom has his head transformed into that of a donkey (as illustrated in the picture below). As the classic clown in a traditional Shakespearian comedy, Bottom appears to be unaware of his own ridiculousness. I played the role of Bottom in the Seventies. However, at the end of the performance I could switch back to reality and to Ari. 

     

On rare occasions I do laugh loudly when I watch television, but generally, my expressionless face has become a real mask. I am aware of this and have noticed that I am able to change the default scowl when I am with my grandchildren, who generate a different reality for me. The PD mask or scowl is probably part of my muscle memory whereas smiling has become part of my "muscle forgetory" (SEE Post 6).

Masking the mask

It is clear that my hypomimia is accompanied by poor and slowed movement, (i.e. bradykinesia), freezing (i.e. akinesia), smaller handwriting (i.e. micrographia) and softer speech (i.e. hypophonia). All these symptoms are part of my PD baggage. However, in my opinion - and as one not on PD medication - my facial masking and slowed movement can be changed depending on my state of mind. 

Like Bottom, I try to remove the PD mask from time to time by laughing out loud or smiling when watching television. Also, when walking using my walking stick, I am masking the mask when I swing my right arm that has been immobile for many years. Forced swinging is part of my walking action in an attempt to improve my gait and create a semblance of normality. This forced right arm swinging action generates a rhythm and allows me to also concentrate on straightening my back while walking. 

Walking is one of my most challenging activities especially when there's a slight incline. For safer and sustained action when walking or climbing stairs, a few years ago I created a set of verbal and auditory cues to sustain an action and for rhythm. In Post 5, I have referred to this as corrective messaging. 

OBSERVATION AND TIP FOR ME I have noticed that a bad mood instills and generates a more debilitating bradykinesia in me. For instance, if I'm upset or frustrated when seated, then my right hand immediately goes into a default claw-like shape and rests on my right thigh. If I'm walking and upset, then the claw-like hand also appears and I tend to drag my right foot more obviously. However, once I have registered this unwanted action and I am able to shift my mood, consciously, then I can "unclaw" my right hand and lift my right ankle while walking without dragging that foot. This represents the masking of a mask, or over-riding an action generated by my PD command centre that has high-jacked my nervous system (SEE Post 8).

Masks: to protect me or to hide behind

Unlike Bottom, I am quite conscious of being parkinsed and its impact on me. I do not have a cure that can be mass manufactured but I do have insight into some of the inner workings of my hijacked nervous system. My response is not  remediation but rather ongoing negotiations with that damn PD command centre. So, in the context of the sub-heading, Ari is trying to protect Ari while PD has managed to hide behind my accident and traumas described earlier (SEE Post 2) that may have caused my PD.

This form of "protection" is not cheap as it demands a lot of energy. As soon as I notice tension causing my PD symptoms to be kick-started, then I immediately attempt to analyse then reverse the whole hijacking process. This reversal process, when played out a few times every waking hour, is energy-sapping and leaves me drained at the end of the day. Attempting to execute a smooth turn from being on my back to lying on my side at night, keeps me awake long after I have turned over. This results in my generally waking up tired in the morning. 

Quite honestly, although I am tired of being tired, I am really grateful for having had ten good years without chronic PD medication. The current challenge on the horizon is my akinesia and balance issues that could result in serious injury if I am careless. Maybe I should consider PD medication, or... 

My form of masque

Protecting myself by masking the destructive masks of PD, I suggest, is a natural instinct and a bold but possibly vain attempt to resuscitate what used to be the norm for Ari. 

During the 16th century in Europe, "courtly entertainment" with stories presented via singing, dancing and music was referred to as a "masque". Broadway or West End musicals are a sophisticated modern day form of a "masque". Before Covid-19, these "masques" required skilled performers with the energy to repeat performances for years at a stretch.  

My "masque" is more of a mime as I concentrate solely on body motions and there is no song and dance. While it has been it has running for ten years, the artist cannot predict the time or duration of the performances. So, don't bother booking a ticket. Till next time, dear reader.        

 

(21) The right to read PD

NB (21) above indicates the numerical order

Last rite

I started the last blog post (number 20) reflecting on the death of family and friends and wondered whether or not I had made a difference in anyones lives. Many years ago my mother-in-law was diagnosed with Parkinson's Disease (PD), dementia and other ailments likely to be present in an eighty-year old.

As a spirited educator and later a headmistress, she had touched the lives of many children. She had been responsible for instilling multiple literacies in her many pupils. In the last five years, she struggled with competence in the basic literacies, namely, reading, writing, listening and talking (dialogue). The presence of PD and dementia had created a perfect storm for to her to become immobile and to gradually stop reading, writing and even talking (monologue). It must have been immensely frustrating for her. Her PD symptoms were familiar and a potential peep into my own future. It was unnerving. Last year I decided to visit her only when it was unavoidable because her deteriorating state was depressing!

Sadly, for us (but happily for her, I believe), my mother-in-law passed away in her sleep in March 2021. She was 88 years old. I was present when she arrived in her coffin. No more frustration for her because she was incapable of speaking. Also, she looked peaceful! 

Evolving literacies

When I first engaged in post-graduate research in 1981 most information was available in hard copy, such as paper-based books, journal articles and newspaper articles while some was available as microfiche in a library. By 1996, I needed to be familiar with Microsoft Office (1997) as well as some basic programming in order to generate research into computer-assisted education. By 2007, my doctoral research drew mostly on information in electronic format. My reading, writing and digital literacy grew my competence and processing information in both formats and allowed me to adapt and innovate. However, what about those researchers who only know how to use computer technology in a superficial manner without the various literacies associated with being a researcher?   

The above context leads to a question: has the ease of access to the internet resulted in a rewiring of our brains? This 'rewiring', namely, the need to curate information and access to technological gadgetry, may be distracting us, adults and children alike, from actual learning. Are we being distracted from what is easy to understand and being led into a morass of unnecessary complexity?

If you're interested dear reader, there is a growing body of research on the impact of technology on learning, such as writing lecture notes in longhand or typing notes and their impact on memory and understanding. One such article has been renamed "The pen is mightier than the keyboard" (2014). As a researcher and facilitator of the structured writing process - what is called "composition" in the USA - I am intrigued by this angle of research. You might be too. 

In post 2 (Parkinson's, mind games and I) from April 2020 (excerpt below), I speculated on search engines and the ability of Google to track and assist my searches with its filtering system. Such filtering effectively places blinkers on your search unless you are a discerning trawler and not easily distracted. 

(EXCERPT) The internet and mind games

One of the mind games I have experienced is when one does a Google search, for instance, on Parkinson's Disease (PD). It will produce millions of hits. However, in this case, most of the content will be associated exclusively with either a medical or a pharmaceutical context. This does not help the few of us who are not taking PD medication. Seldom are you invited to consider alternatives, unless you specify search terms such as "drug free", "natural remedies" or "PD exercises". If you visit the Fighting Parkinson's Drug Free site it states: "Whether you are fighting Parkinson's without medications or fighting Parkinson's with medications, everybody is welcome here!" 

So, regarding distractions, are we taking prescribed medications without considering alternatives because we are encouraged to do so by the tracking and the subsequent filtering systems in search engines? This is like not questioning some medical doctors because they wear white coats. The recent controversy regarding Ivermectin, where the WHO advised that it could only be used to treat Covid-19 within clinical trials, may be a case in point when South Africans were also considering its use. Are we literate enough to make a choice? If yes, then why do we not question the efficacy of drugs developed to ease PD?

The "Dark side of the moon"

The title of an album by Pink Floyd in the 1970's resonates with the photo, below, taken in Gauteng in 2014 during a late-night eclipse. The partially visible side of the moon represents a tiny portion of what remains in the dark. The non-visible portion is similar to the impact and intensity of PD where the initial symptoms are a mere tip of the proverbial iceberg. My trembling right thigh in 2012 was the tip of a PD iceberg and what was to come after diagnosis in 2013. 

Being unable to read, write and be numerate may be immaterial to a street child or a homeless adult who has a successful infrastructure for survival. However, the potential for the homeless to help other children or adults may not be easily determined and could be as great as the area on the 'dark side of the moon'. 

You have the right to an attorney alternative treatment

I am of the opinion that alternatives to treating PD with drugs may be simple and based on individual needs. Clinical trials for some alternative and drug-free PD treatment regimes are needed to encourage medical doctors to reconsider their present stance. We must be able to read the signs of PD and be able to respond to symptoms with both a drug regime, fully aware of side-effects, as well as a drug-free regime that does not interfere with drugs if taken. 

I hope I do not become parkinsed to the extent that, like my mother-in-law, I am unable to talk and later unable to speak. Then I will be inside the 'dark side of the moon'. Till next time, dear reader.