(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.  

(19) PD clause: take care of head and limbs will follow

NB (19) above indicates the numerical order 

The past 

In December 2015, we travelled by cable car, into the mountains, in order to get to a monastery on Lantau Island, Hong Kong to see a giant buddha. While my wife and the grandchildren explored the nearby village, I sat waiting nearly an hour for the mist to lift so I could see the 34 metre high bronze buddha (picture below). The trees on either side of the buddha indicate its size and distance from my vantage point. What a view! It was worth the wait.  

The present

Parkinson's Disease (PD) has severely compromised my movement since 2013 and I have spent years searching for measures to ease the PD muscular lethargy. I use the word 'ease' as I wish to be realistic. As mentioned in previous posts, I have already used wrist weights, a monopod that doubles as a walking stick, a fiddle spinner, stress balls and small dumb bells. I've learnt to close my eyes to counter my muscle "forgetory" as my muscle memory is waning. 

In addition, I have developed a system of corrective messaging where I constantly tell my muscles what to do. I guess it's my attempt to conjure up virtual dopamine. One example is saying "toe-toe" - a contraction of a longer message for normal walking - when climbing up four flights of stairs to our third-floor apartment. In the past four months I have neither stumbled nor tripped and my unscarred shins will attest to that: success!

Opting for a drug-free approach to PD is taking The Pinky and the Brain way. Well, the Pinky in me decided eight months ago to try out the laser therapy in Durban and that has helped reset a large part of my brain. The next step was to review my decreasing mobility, especially during the lockdown. Enter the mini bike.

REVIEW: Threshold sports mini bike

Earlier this year I came across a stationary, motorised, exercise bike to help with arm and leg movement during the COVID-19 period when beach walks were not an option! The bike retailed for around R10,000 overseas. The cost bothered me so I searched for an alternative and found a few that are available in-store and online. I opted for one that cost around R2,000. 

The non-motorised, manually driven Threshold sports mini bike (in picture left) was delivered to my door by an online supplier a few weeks ago. It required a bit of assembly that took me over an hour due to weakening muscles (sigh!) but once complete it was perfect. 

It is 35cm high and 40cm wide so it may be placed under a desk or table for cycling using one's legs and one's arms and is easy to store. As it weighs just under 9kg it is relatively easy to lift onto a higher surface for cycling using one's arms. I have discovered that if it is on a solid surface about 40cm off the ground, it provides a challenging arm exercise while seated. The mini bike mechanism - a magnetic flywheel - is quiet and has 10 levels of resistance. Naturally, I am on level 1 and am managing between 10 and 20 minutes at a time. It is too soon to tell what effects it will have but it has been a major confidence booster. And being parkinsed means a gradual erosion of confidence, so...

An important feature of the mini bike is that I sit upright in a chair when I cycle. Years ago, when I used to go to a gym, sitting astride a stationary bike challenged my balance, and I felt compelled to hold onto the handlebar. However, when I am on the mini bike my back is supported, I am balanced perfectly, and I can do whatever I want to do with my hands and arms. 

Since retirement in December 2017 I have only been able to walk at supermarkets and large malls with the assistance of my walking stick or pushing a shopping trolley. Being able to cycle for 20 minutes without stopping has been an amazing experience. It is re-introducing the notion of coordination to my gradually weakening limbs and their muscles.     

Back to the future

On 04 January 2021 I will be back in the neurolaser clinic for therapy. I have also started reading Michael J. Fox's new book called No Time like the Future - I'll share some thoughts on that sometime in the future. 

2020 has "Mcflown" past, courtesy of COVID-19. I hope that you, dear reader, will continue to stay safe till 2021.

                                                    

(18) Forks and food for thought!

NB (18) above indicates the numerical order

Being grateful for being

By the end of December 2020, the following should be true:

• I would have completed 23 sessions of therapy at the Durban Neurolaser Clinic; 😲
• I would have experienced nine months' COVID19 lockdown; 😕
• My tremors would have increased (more Elvis Presley); 😔 but
• I should be a tad "fitter" than I was earlier in 2020 😊.  

I received my first salary in 1977, I was diagnosed with Parkinson's Disease (PD) in 2013 and I retired in December 2017. While my profile during that time morphed from power walker to tremor carrier, I am grateful for this unfolding experience except, of course, for the past three years' daily battle against PD.

The picture below of a weaver building a nest, starting with that initial hoop-like structure, was taken in the KwaZulu-Natal, Midlands in 2017. At that point of the build there was no perfect beaker shape nor underside entrance, just the start of a journey of persistence rooted in blind faith. Let's explore that idea.            

Of forks and roads

In 1970 I had a matric certificate with commercial subjects so I could not enter university. Consequently, in 1971 I enrolled at a larger high school in another city where I repeated standards 9 and 10 (i.e. grades 11 and 12) and included maths and physical science for the first time. What a challenge! I arrived at 'varsity in 1973 after being confronted by my first fork.    

When I received my very first salary cheque in 1977, there was no clear view of the future. I guessed that on life's journey, there would be choices to be made and those would determine it. 

In 1984 I resigned from my first job - a permanent post, and another fork - and registered full-time for a Higher Education Diploma, hoping it would better prepare me for lecturing. In 1985, after completing the diploma, I was offered a job that included facilitating the development of university students' academic literacy. In 1990 I joined another institution to drive a computer-assisted academic literacy programme, one of a few nationally. During this stint I realised that university teaching staff were also faced with challenges and by 2002 I had crossed over to facilitating the professional development of teaching staff. 

In my fork-filled higher education career, between 1977 and 2017 I had the privilege of working at universities in Gauteng, KwaZulu-Natal and the Eastern Cape. Like our weaver above, each time I examined my practice and sought change, I believed it was time to build my nest elsewhere.     

In retrospect, [The] Pinky and the Brain analogy sustained in the past few posts has become an important element of my 'persistence' and life choices. I think I have always had an adapt-or-die philosophy. Also, I have been strongly rooted in the notion of being a practitioner-researcher in contrast with being a research-practitioner, as explained in a previous post.      

Is it safe to indicate?

It seems that choosing which fork to take in a road can end up being either a poor choice or provide an opportunity to innovate, and this can manifest in different contexts. 

Between 1987 and 1999, for instance, many higher education academic literacy programmes were packaged for specific target groups of students. These programmes were based on linguistic assumptions that were generally appropriate for their countries of origin and embedded theories. So, I sought an alternative sourced from experience and my practice. 

In 1987 I decided to use visual and audio excerpts from American television series, movies and radio dramas as the basis for additional "Bridging English" classes. This approach was in order to stimulate students into engaging with English language differently. My approach was successful and student pass rates improved significantly. Th stigma attached to "second language" classes had been minimised and  additional classes were scheduled to cater for growing interest. In 1979 the programme attracted American "social responsibility" funding that benefited both the students and the university.  

By 1990 I was offered an opportunity at another institution to drive a university-wide initiative using computer literacy as an incentive to improve written English language. I was confronted by another fork. An exciting time to indicate and to change lanes on life's highway. A common mistake due to mother-tongue interference is that first-year university students writing in isiZulu would often omit the article preceding a noun. One reason is that articles and nouns in isiZulu are combined into a single concept, e.g. an office in English is "ihovisi" in isiZulu.

This lead to many such students being marked down by lecturers assuming it was merely careless writing. However, when lecturers were sensitised to this phenomenon, lecturer bias was transformed into lecturer insight. Such insights, together with the computer-assisted literacy programme run each semester, led to our team making a significant impact on hundreds of students between 1990 and 1997. But let's return to alternative remedies for parkinsed people. 

Can abyss be dangerous?

Dr Javid Abdelmoneim recently examined the complex world of cannabis in a BBC documentary entitled Cannabis: Miracle Medicine or Dangerous Drug?  He visited a joint (pun intended :-) Canadian-Danish pharmaceutical enterprise cultivating cannabis plants, he  participates in a British clinical trial into cannabis and he travels to Israel to interview a cannabis researcher and cannabis service providers. Also, there is coverage of a six-year old whose epilepsy is cured after taking cannabis oil. 

For me, there is credible evidence of the wide range of applications of cannabis, as well as valuable insight into the complex calculation of deciding on the proportion of CBD and THC required by each individual. The dosage issue is similar to that unpacked in the L-dopa Conundrum article presented in an earlier post. My cannabis fork was that after three years of avoiding medication I tried cannabis oil orally in 2016 but without any idea of its quality or what proportion of CBD-THC was present. It had no effect on my tremors but I acknowledge that they were mild at the time. 

I am now interested in trying cannabis oil again, especially for the tremors. And so I will revisit an old fork... 

Next post: mini-bike review

In the next post, dear reader, I will review a new mini exercise bike with pedals that may be propelled by either both feet or both hands. So, is it a nifty piece of equipment for PD sufferers and others, or merely another useless gadget? We'll see.

(17) PeeDee and the brain |Part2|: am I my own enemy?

NB (17) above indicates the numerical order

(It's been six weeks since I posted. There have been a few revelations that I needed to verify, so I hope this read is worth it.)

A PD reality check

Recently, I was informed by a KZN branch of the SA National Blood Service (SANBS) that my Parkinson's Disease (PD) tremors make me a risky bleeder and I needed (1) a medical doctor to confirm I was ok to donate. That is their normal protocol and acceptable. However, I also needed (2) to present proof of my PSA levels (indicates the status of my prostatitis). Only then would SANBS confirm that I could donate. Combine (1) and (2) and my reality "cheque" has bounced. Not only would it have been my 128th donation but one more purpose in my life may have been removed. Grrr! 

I'm now, officially an ageing KZN person with PD. I do miss all the staff at the Atterbury branch of the SANBS in Gauteng! I also miss my close friends and the Dance for PD support group there.  

Pinky and my Brain (continued...)

I need to recall an excerpt from my previous post (no. 16) for context in this post.

 

"[...] let's assume PD is represented by the character Brain, while my resistance and fightback is represented as Pinky. The more PD (that is, a Brain) tries to convince me that I am on a downward spiral, the more I resist and present a conscious fightback so that my muscle memory (driven by a Pinky)... 

The Pinky in me appears to be benefiting from the laser therapy while the Brain is mounting constant attempts to take over my world. Like Pinky, I often appear to be overcome by the intruder, Brain - represented by the intensity of my tremors and my increasingly awkward gait - but my not being on PD medication allows me to resist more deliberately and more often. Good stuff, Pinky. Narf!"   

I am still erratic regarding my consistency with indoor exercise and walking outside. However, a few weeks ago after my fortnightly therapy, I read this blog from the beginning, thoroughly. And it was uplifting. I felt Pinky spurring me on to see posts with fresh eyes. My own Pinky resistance movement.

The lack of confidence to which I have referred as a result of my PD has been countered by strategies that work for me, such as the remedial messaging, consciously telling myself what to do. I realise that the messaging has not been explored to its limits. My so-called Pinky resistance had muted echoes of what happened in Europe during World War 2, in South Africa during liberation and in Egypt in 2015: I've been "gathering intelligence" regarding my 'intruder', PD, in order to wage resistance. And at what cost?

Frankly, at little cost. All "intelligence gathering" has been an internal operation and my handlers a.k.a. Pinky, have sworn allegiance to me! It's an Ari, über alles! approach. In the picture below I managed to capture a likeness of a Pinky lurking behind me, the old tree with PD... 

Tips and tricks: update

My gradually weakening body seldom does any stretching, so back to my basics. A few weeks ago I discovered that to put on footwear, I should silently repeat "bend-two-three stretch-two-three" and this has started to work for Pinky and me. I do the same when soaping myself in the shower. The corrective messaging appears to strengthen Pinky's resolve. Now I need to find a way to address my mood swings.

UPDATE OF TIPS FOR ME: 

• For relief when seated, I do repeated shoulder hunches as far forward and as far backward as possible. Then, I raise my feet off the ground to knee height, or constantly cross one foot over the other to ease the tension. 
• When standing for a while, I constantly shift all my weight from one leg to the other. This is easier with a walking stick. 
• To ease tension in my hand I hold or touch a small stress ball in the palm of my hand without squeezing it. This often eases my tension and generally reduces the intensity of my tremors.
• To put on footwear I first close my eyes then repeat, silently, "bend-two-three stretch-two-three" while extending my hand to connect with the footwear and to ease it over my foot.
• To walk up stairs I consciously focus on my feet and when ascending I repeat "toe-two-three" as each foot reaches a tread. 

Laser therapy and Pinky and me!

I have now completed 21 sessions of low intensity infrared light therapy mostly around the cranial and cervical areas. Since last month I started having fortnightly sessions and there have been no side effects or withdrawal symptoms bar the usual 24-hour adjustment period for my body immediately after therapy. I plan to continue with the fortnightly sessions while I can...till next time, dear reader.

 

(16) PeeDee and the brain: am I my own enemy?

What is realistic?

As you know, dear reader, I have been struggling with the notion of the following: what is fake in the context of being parkinsed? Is it an alter ego, my nervous system and brain as well as the presence of high-jackers as described in an earlier post? These perceptions are depressing when considering both the recorded and the experienced issues surrounding Parkinson's Disease (PD) and the impact of medication. In this post I have decided in favour of pondering on my anguish against the backdrop of recent relief and I hope this lasts. That is, the 'pondering' and not the 'anguish'. So, let's ponder - but first, a detour... 

[The] Pinky and The Brain!

Those of you who were watching television in the mid-nineties might remember an animated series that involved adult-like adventures. Sometimes they interacted with famous people, like former president Bill Clinton. Ostensibly a children's programme, "[The] Pinky and The Brain" was about two rodent-like creatures. Described as "laboratory mice" in the theme song, [The] Brain (the shorter character on the right of the picture below), supposedly the cleverer of the two, uses [The] Pinky (the taller character on the left) as a foil for his fantasies. However, while [The] Pinky appears to be the fool, [The] Brain is never actually able to execute his ingenious plans to take over the world. It is possible that [The] Pinky was created as court jester to provide a sounding board for [The] Brain's frivolous fantasies, thereby giving him some credence. 

While [The] Pinky appears to be the subservient, bumbling fool and [The] Brain appears to be deep, Brain is never able to execute his devious yet ingenious plans to take over the world. So, who is fooling whom? Is one of them 'fake' or was it pure edutainment?

My wife and I loved watching this programme with our children.  So, if you have ever pondered a ponderable, for instance, what do the actual persons doing [The] Pinky and [The] Brain voice-overs look like, go to this interview with actors Rob Paulsen and Maurice Lamarche. Also, if you are curious about my pre-occupation with the use of 'ponder', then do check out this short compilation of excerpts of the best of "Are you pondering what I am pondering..." in [The] Pinky and The Brain. 

PeeDee and my brain

In previous posts I have outlined my assumptions regarding PD and how it has 'highjacked' my body. I also referred to PD as an 'intruder' and how I have had to fight in order to counter the highjacking. Well, let's assume PD is represented by the character Brain, while my resistance and fightback is represented as Pinky. The more PD (that is, a Brain) tries to convince me that I am on a downward spiral, the more I resist and present a conscious fightback so that my muscle memory (driven by a Pinky) responds appropriately. 

The Pinky in me appears to be benefiting from the laser therapy while the Brain is mounting constant attempts to take over my world. Like Pinky, I often appear to be overcome by the intruder, Brain - represented by the intensity of my tremors and my increasingly awkward gait - but my not being on PD medication allows me to resist more deliberately and more often. Good stuff, Pinky. Narf!   

So, am I responding to my new, "normal" alter ego represented by my PD, and a manifestation of my new muscle memory: a Pinky approach! Or, is it "fake" and merely a series of new muscle responses reacting to mood swings and making a grand entrance at appropriate times: a Brain approach? Whatever the case is, here are some facts:

• I was diagnosed with PD in 2013;
• I opted to avoid all chronic PD-related medication;
• The tremors have become progressively and noticeably worse since 2016; 
• Physically I am unfit, overweight and unable to make certain reflex movements;
• I started laser therapy in May, 2020 - four months ago;
• Laser therapy has woken up the mental part of me that has been dormant since 2017; 
• Recently, I have had the urge to do simple exercises everyday; and
• The Brain has always advised me against all exercise in favour of staying in bed!    

Am I in touch with my inner Pinky, with my alter-ego, with the Ari that has been shielded from succumbing to PD because I am not on medication? Or is this a fake sense of well-being before I progress to another phase of being parkinsed? 

I will start weaning myself off the weekly laser treatment at the end of October and attend fortnightly therapy sessions. Stay tuned, dear reader.  

(15) PD-2020, Covid-19 and triggers

(August Silence. We have moved permanently to retire in KZN and as our Gauteng house is for sale we needed to do a final clearance. So, we drove back to Gauteng in the middle of a warm August spell so the days were pleasant. I've recovered from the drive so now I can continue with the Parkinson's Disease saga. Also, since 07 September,  I have resumed my weekly laser therapy.) 

PD and Covid-19

The impact of the Covid-19 epidemic in South Africa and lockdown resulted in a tense time for the aged, especially those with co-morbidities. For the past five years my wife and I have avoided taking an annual flu vaccine, in an attempt to bolster our immune systems. However, this year, hype and unpredictability around the nature of coronavirus led to our taking both the flu and the pneumonia vaccines. That was my primary reason for taking the vaccines and, so far, so good.

Besides my age, another reason for considering these two vaccines is my preoccupation with triggers and PD. These triggers exist in both my "muscle memory" as well as my "muscle forgetory" (see earlier post) and lead to reactions that I have to counter or minimise. Triggers often lead to a physical manifestation resulting in tremors, leaden limbs, anxiety setting off excessive perspiration or even shortness of breath, the latter being a manifestation I have noted for the past ten years. So, recent bouts of shortness of breath (specifically during the past two months) have made me wonder if I had picked up the virus. But then I had to remind myself of similar instances of 'shortness of breath' predating the epidemic...

Rooted or booted

The picture below was taken in 2019 in Riebeek Kasteel, Western Cape. The tree's visible roots are vital to the tree's existence and are not superficial, like warts that are often just excess skin that may be removed. I have shared this picture to illustrate the presence of Parkinson's Disease (PD). If I am the tree, then my PD is similar to this tree's root systems. It has invisible, underground roots that have infiltrated and now commandeer the engine room of my nerve and muscle infrastructure. It also has roots above ground that represent visible manifestations, such as my tremors, leaden limbs and awkward gait.

I will attempt to sustain this analogy rather than leaf it alone 😏. My triggers exist within the equivalent of the tree's original, underground root system and, therefore, exist in my memory as past trauma or unpleasantness. Allow me to unpack this. Whenever it is cold I shiver but the shivers become tremors which I have referred to as "trevers" in an earlier post. Nowadays, when it is a little cool in an air-conditioned  mall and I am away from my house without a jersey, then I respond by believing it's going to get colder. Partial discomfort and low stress is triggered. I have to remind myself that I am okay, that all is well and that I do not need the jersey.

Another example of a trigger indoors is having my walking path blocked by dark coloured objects, such as a pile of socks or plastic bags on the floor. I have the uncomfortable feeling that such objects - although insignificant in size - are going to make me trip and fall. These are insignificant images in my peripheral vision but prompt low levels of irritation that develop anxiety in me. The triggers are becoming more prominent in my daily life as is my constant reflection. 

The laser treatment that I have been undergoing since May 2020 is an attempt to energise my body's internal communication system and remind it of my pre-dopamine depletion period. That would be the equivalent of kickstarting processes driven by the tree's original, underground root system before creating the need for the aboveground roots. 

Whither laser therapy

In order to reinforce the therapy and to reverse my "new normal" described earlier, I have had to to constantly speak to my barely existent movements so they are reminded to respond. I believe my brain has been kickstarted but because of my physical unfitness, there is a lot I have to do in order to allow body and mind to talk to each other. Based on a reminder from my brother (thanks, S!), I have started online Tai Chi again. The dialogue absent between body and mind during the dark days of PD and pre-laser therapy, needs to be regenerated. 

An example of such regeneration would be the "corrective messaging" described in an earlier post. When walking, I would have to remind my right heel to move before my toes so that my right foot stops dragging on the floor. The silent reminder, if you remember, would be "right-heel two-three toe-two-three, left-heel two-three toe-two-three".

I have just completed my 17th session of laser therapy and there are growing glimmers of hope. It's up to me to fight the good fight...till next time. 

 

   

Covid19 safety and vaccines

Will power and "ME" (Ari vs Intruder)

(14) PBM & PD: more questions than answers?

What is "normal"?

What does the word "normal" mean to me? Well, I have three responses. Is it to be a man in his late sixties and (i) to ignore the onset of my Parkinson's Disease (PD), (ii) to acknowledge I have PD and am sensibly medicated or (iii) to acknowledge I have PD and (actively or stupidly) engage in finding drug-free alternatives to the disease? I am reminded of a song by Johnny Nash: 

There are more questions than answers
Pictures in my mind that will not show
There are more questions than answers
And the more I find out the less I know
Yeah, the more I find out the less I know...

So, "There are more questions than answers"! 

Is drug-free PD realistic?

Would it be realistic to accept (i), (ii) or (iii) above? The first response is unrealistic as, when possible,  I've generally sought alternative remedies for any ailments. The second bothers me as I would not know how to deal with those periods between the drug wearing off and waiting for the next dose (this is second hand information). And I say this with great admiration for all those who are parkinsed and are taking medication. So, I need to justify my current approach, namely, a drug-free approach to PD. 

I have been thinking a lot about approach (ii) and opting for medication over the past month as I have moved from thrice-weekly to weekly doses of laser or near-infrared (NIR) therapy. The weekly doses are great for a few days but then appear to wear off, I imagine in the same way the medication is reported to "wear off" in some who are parkinsed. I completed a total of 14 sessions of therapy between 03 May and 03 August 2020. That includes the initial 10 sessions over three weeks (May), followed by the mandatory month-long break (June) and now weekly maintenance sessions (started July). To date I have had four weekly sessions. 

Sadly, my tremors have worsened. It is reasonable to assume that the increased tremor is the natural progression of being parkinsed since 2013 (remember "I'm all shook up" 😀). But worse still was the difficulty in maintaining a daily exercise routine. By the way, exercise for PD includes standing for long periods, sweeping, walking up and down stairs, stretching in the shower, etc. Consequently, I have been thinking about PD medication. 

The picture below, taken at a Gauteng bird park, illustrates my quandary. Do I continue to follow my heart and eat later like the pelican in the top-right corner, or do I want to be one of the crowd and eat now, like all the others?          

Is PBM worth it?

My non-committal answer to photobiomodulation (PBM) is: "Maybe. Maybe not." That is always a useful contradictory response when one is in a quandary. 

In the last post, number 13, I drew attention to seven contrasting factors surrounding my NIR (aka PBM) therapy. Today, after my 14th therapy session I am on top of the world and feeling like the old "me", feeling clear-headed, feeling confident and feeling positive. This is a Go Ari time of the month! 

In the last post, I also drew attention to the 'apparent separation between the mind and the muscles', and there's the disjuncture. I have been spending a lot of positive energy on pre- and post-PBM/NIR because I need to make sense of my decision (thanks O.M. in Durban for a heads-up on the Carte Blanche documentary). It is so much easier to experience the therapy as someone else is doing it for me. There is  no doubt in my mind that the "intruder" inside me will get stronger but I would like to think that this therapy is allowing me to deal more effectively with this eventuality. However, I need to maintain the Biokinetics routine together with the therapy. Simple, really, to address the disjuncture but easier said than done. There is no group to help motivate me as I had in the Dance for Parkinson's classes in Gauteng. It's just me, myself and I. 

If I am able to balance the amount of energy spent on both the mind and the muscles then this PBM/NIR adventure should be worthwhile. 

A way forward

I need to stay with the programme and address the notion of a 'disjuncture' above. Creating a balance between the agility of my mind and the flexibility of my muscles is critical in order to merge the two functions again. August is the month of my revisiting this disjuncture so I may return to the august company of my mind and my muscles. Eish! 

Till next time, stay safe.