(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.

(20) PD outfoxed: when the odds are stacked...

NB (20) above indicates the numerical order

No time like the present

In December, a young friend took ill and died from Covid-19 within five days. What a shock to my system! (And the Covid-19 virus has already mutated into variants on a few continents.) While I was finding ways to deal with this personal impact, within a few weeks, two colleagues (and good friends) succumbed to cancer and last week another friend passed away after suffering a stroke. Life is a gift and I need to revisit this fact by reminding myself of mortality, in a positive sense. This begs the question: Have I made a difference to others during my life and have others made a difference to mine? 

There is so much written on Parkinson's Disease (PD) that has been scientifically researched and even generated a Nobel Prize, yet, world-wide, there are growing numbers of people contracting PD. In this blog I have scraped the surface with two reviews in earlier post 3 (PD experiment in a movie) and post 4 (PD clinical trial of GDNF), in case you missed them, dear reader. What progress has been made over the last fifty years - either by medical science or drug-free approaches - to make us better understand Parkinson's?   

Fox in the box

Someone who has made a difference to PD research is Michael J. Fox. Although I am a sceptic when it comes to most pharmaceutics-driven research around PD, his Foundation walks the talk. One unusual clinical trial in Australia and supported by the Michael J. Fox Foundation is the StandingTall-PD project. It aims to repurpose Sensoria smart socks and this wearable technology will help PD sufferers with their gait and balance. These socks were originally developed to assist runners improve their technique. 

Another project is the Fox Insight research programme, an "online clinical study building a large, diverse  cohort of people with PD...". I was curious and as I am not seeing a neurologist, I decided to join this programme. I was impressed. There is a long survey (under two hours long) to complete every three months, and access to tools to assist before visiting one's neurologist. These are some of the many projects supported by the Foundation that has already raised a staggering $800m to support PD research.

REVIEW: "No Time Like the Future" by Michael J. Fox (2020)  

Sub-titled "An Optimist Considers Mortality" (after reading its meaning becomes clear) this book unpacks the life of Michael J. Fox. His story see-saws between two points of tension: a man in his late-fifties reflecting on thirty years of PD and a successful twenty-nine year old actor and athlete peering into a future with PD! To understand the tension, it helps to have seen his "Back to the Future" movie trilogy as well some of the many award-winning TV series, the most recent in South Africa being "The Good Fight". If you've not come across his performances over the years, then this book will help unpack his life and his PD.   

Diagnosed with PD in his late twenties when he had already become a successful screen actor, he had some serious choices to make, starting with public disclosure of his PD status. This was to impact on a career that started early in his life when he left high school in Canada to find work as an actor in the USA. The PD diagnosis was a blow to this young athlete whose energy and drive had known no bounds until then. He and his wife, Tracy, had to contemplate their life choices and their four children became an integral part of that decision. It was a matter of engaging with his new PD status by gradually developing a new, mature version of the old Fox. 

Through aptly titled, short chapters with multiple sub-sections, the reader is invited to join him on his roller-coaster life-changing health journey. From his PD and accompanying rehabilitation to removal of a tumour on his spine (and rehab) to a terrible fall that shatters his arm (and introduces more rehab). For me, these are the most revealing as they involve detailed accounts of the impact of PD and how one's work and home environment can become an obstacle course! That's a major thread of the tapestry that he weaves. 

The longest is chapter 4 entitled "High Times" where he gives an exquisitely detailed account of a trip to the Kingdom of Bhutan, the country attempting to instil and measure ingredients for its peoples' Gross National Happiness. A good example of Fox's writing is captured in his description of the flight over a mountain range in order to reach Bhutan: "Flying over the Himalayas is like housesitting for God..." (p.36). The chapter is beautifully written, paying attention to the beauty of the unique surroundings and, in my opinion, tempting the reader to pay a visit.

Embedded in this chapter and others is what I'd call the PD paradox. Danger is always present when a parkinsed person is without assistance in an unfamiliar environment. This occurs during the Bhutan visit when Fox falls on a steep pathway. However, being in an unfamiliar environment can also be a safe space, where the environment encourages someone with PD to reimagine what is normal. This is the equivalent of restarting a computer or reassessing one's needs with confidence. An example is of Fox's waning need for chronic PD meds while in beautiful Bhutan. I've experienced a similar 'waning need' a few times. For me, these are Pinky resistance moments.

The idea of this PD paradox of the unfamiliar being both a 'dangerous' yet 'safe' space could be explored in this context: the nature and impact of PD as a destructive force versus learning how to nurture alternative ways to deal with PD. I have alluded to this in posts 16 and 17 as my Pinky and The Brain approach to dealing with my PD.

A third set of threads in the story is Fox Foundation work and fund-raising that attracts committed individuals to get involved in running an extraordinary multi-million dollar organisation. This includes the Foundation participating in ordinary events such as golf days and marathons. 

A fourth set is the camaraderie that develops as a result of his attempt to play golf and its place in his life. Golf has little to do with his competence as a golfer but everything to do with accompanying routines, friendships and applying his skills to a set of fun tasks. (I can vouch for this after three months of trying to learn to play golf: it tries your patience and it is an expensive hobby.)

Shaken, and stirred

Double Oh Seven and his antics would be a welcome addition to the arsenal of strategies required by those who are parkinsed. I wish my tremors would subside so I am stirred into normality rather than constantly shaken. Tremors are energy consuming when they are allowed to be. I am constantly fighting them while I'm awake.  

In the final analysis, Fox's PD and accompanying afflictions are described in useful detail in this book and regularly criss cross his life story without confusing the reader. I have new-found respect for him. For those readers who also are or were Thespians, there is much to glean from his perspective of an actor playing the role of a character with PD. This is clearly illustrated in his role as defence attorney, Louis Canning, where the character works within the physical bounds of a parkinsed person, rather than attempting to hide the PD symptoms. 

    

Till I write again...

The final curtain

I am grateful for having crossed the paths of four souls who made a difference to my life: Vaneshri; KribenP; PaulB; and SibongileK. R.I.P.