(55) PD & control: my IN/Dependence

Persons with Parkinson's (PwP)

As a Person with Parkinson's (PwP) I often ponder the imponderable when an action I'm attempting to carry out is disturbed and out of control by my freezing or by my limb tremors. Some of the pondering involves considering whether or not my being parkinsed is:  

1. An Internal malfunction in my body that could be the source of the 'disturbed' action and this would include genetic factors inherited via "faulty" genes from my parents, resulting in my Parkinson's Disease (PD); or the result of  
2. External issues that could also be the source of a 'disturbed' action and include drug abuse, effect of cellphone use, impact of chemical exposure, accident trauma, etc. resulting in PD; or
3. ?

If it's rabbit hole 1. above, dear reader, then I should be able to find a medical specialist or researcher who will be able to point out a process to follow, leading to possible diagnoses of my gene trail. If it's 2. then I should also be able to find a medical specialist or researcher who will be able to offer diagnoses and ways to explore external issues. However, both these views are mere speculation unless I am a permanent resident of a First World country with reliable medical support. 

Hmmm...unpacking my thoughts in such a simplistic manner allows me to wander down a third rabbit hole: 3. The "Internal" and the "External" issues are actually two sides of the same coin. Both result in the same outcome, namely, being controlled by PARKINSON'S DISEASE! I become dependent and allow PD to determine my future. (Sigh!) 

I could also focus on the positive side of dependence and accept someone into my life to assist me with my daily living as a PwP. This is also known as assisted daily living (ADL) but more about that later!  

Dependence or INdependence or...?

Let me now explore a thought related to the three issues above via another "*noitcelfer" (*see Post 54 😉) regarding the impact of being independent (IN) or dependent (D) relative to my life. A brief outline is represented in the following list. 

• 1977 - first salaried appointment as a post-graduate student
• 1980 - first salary as Lecturer (➢IN, employable professional but D on employment)
• 2013 - first diagnosis of PD (➢D on medical research but IN to decide on direction)
• 2017 - officially retired in December (➢IN and employable but as PwP, D on pension)
• 2018 - first pension in January (➢D on pension as income)
• 2022 - first started Ayurvedic regime for PD (➢D on treatment but IN of side-effects)

Between 1980 and 2017 I was earning a regular salary with benefits and became dependent on having employment but my creative spirit resulted in my not being dependent on one specific employer. When retirement ended my working life in December 2017 I became independent and not reliant on any one employer. But I am completely dependent on a pension as my monthly income. I had been employed for 36 out of 40 years when I was diagnosed with PD in 2013 so I am grateful not to have had early onset PD. 

My last employer offered me part-time employment for 2018 but I turned down the offer in order to focus on my PD full-time. In retrospect, that was not a wise decision for my career but perfectly suited to discovering more about my PD and how to engage with it.

So, like the internal and external issues regarding PD above, my experience of IN and D in my career is that they are often relative to each other. Below is another "*noitcelfer" (*see Post 54 😉) that is linked to personal assistance and some effects of IN and D.

Assisted Daily Living (ADL)

According to the Stanford Parkinson's Community Outreach programme in California, PwP "want to remain as independent for as long as possible." To support this belief as well as the notion of "Assisted Daily Living" (ADL), they have produced a PwP-friendly booklet entitled Be Independent (2009). It is very useful because, as you can see, the language used is simple and the many, accompanying hand-drawn illustrations are apt. I have found and used a number of their practical tips.

A few years ago, my wife diplomatically introduced the topic of caregiving and then, soon afterwards, introduced a caregiver, NM. Naturally, I was certain about the "Daily Living" but completely uncertain about the "Assisted" part. Well, grudgingly, I agreed to the idea, a trial period followed and now I would lost without her, even though she only spends part of the weekdays with me! The timing of her arrival and presence as a caregiver was perfect, given my growing Dependence - since late last year - on someone to help me to shower and to dress.  

In conclusion, I have now become Dependent on and enjoy being assisted by NM, so far less stressed about my state of assisted daily living. I accept that I'm a PwP: I am 72 years old, on a drug-free PD regime, and my brain and memory are still good, as is my handwriting. There is much for which I am grateful. So having to rely on assisted daily living has become part of my being a PwP! So, I'm unable to drive, I walk funny and I have visible tremors but, I am a PwP!!!

The most positive part of being assisted with my daily living is that I have daily routines between 08h00 and 14h00, from Mondays through to Fridays. The constructive part of having eating & exercise & entertainment & medication routines managed and supervised by NM (and my wife) is that I exercise on my own over weekends and public holidays when NM is not with me rather than take those days off :-). It's an example of the complex relationship between one's perception of the notion of INdependence and Dependence compared to what can exist in reality.     

Till the next post dear reader, do take care!

(54) PD - SOME "SNOITCELFER"!

"SNOITCELFER"!

I enjoy playing with the English language, while trying to maintain my readers' interest. If I need to draw your attention to specific text or an idea, I could type it in reverse so, this underlined-in-red text would then appear to you as: ".esrever ni ti epyt dluoc I". Okay, got it?

Because it will confuse an unsuspecting reader's brain, I have been limiting the length and context of reversed text messages to Facebook birthday greetings to close friends, such as ".orb ,YADHTRIB YPPAH" and many friends will respond with a ".irA ,sknahT". I would be relieved if you had already worked out the reversed text ("SNOITCELFER") in the title above. I will be using a non-PD related illness of mine to draw attention to PD-related issues.     

In this long overdue Post 54, I will "tcelfer" on my (A) recent observations (including some speculation) of PD especially after another precautionary prostate biopsy as well as on some recent developments in (B) PD research and development. Both issues have required me to observe and analyse as objectively as I can so that my post is worth reading. And I have connected the dots for you, dear reader. 

My prostate & my Parkinson's

I have had an enlarged prostate gland (urologist number three surgically reduced its size in 2021 and did a biopsy at the same time), also known as BPH. I have been treated by four urologists each with a different approach. I have also had four biopsies (2004, 2008, 2021 and 2024) so, over a 20-year period, four different urologists have removed some prostate tissue to work out why I had a fluctuating PSA level. My PSA level was at a dangerously high "16" in 2014 but then dropped to "7" with medication ("5" is regarded as a safe level). Urologist number three speculated in 2021 before my prostate reduction surgery that the dramatic drop in PSA level was due to a double dose of similar prostate meds (between 2014 and 2021) that consequently resulted in false "low" readings during any blood test for PSA. Sigh!

Let's return to this notion of the increased/adjusted dose as many of my friends who are people with Parkinson's (PwP) have related similar stories: when one or more of their Parkinson's Diseases (PD) symptoms worsened then their doctors promptly increased their medication dosages! In many cases the one change - and this is anecdotal - is that the window periods of both the "on" and "off" times change accordingly. So, my double dose of meds from urologist number three was sneaky, medical aid paid for it, I thought I was being healed and so I never thought of getting a second opinion. Retiring to a new province forced me to do so as I had to source a new GP who, in turn, recommended a new urologist.

My concern with the increased/adjusted dose is that we PwP are decreasing our reliance on our natural adaptability, for instance, in the form of neuroplasticity (do watch this Lara Boyd video), in favour of increasing pharmaceutical intake. We are ignoring the power of the mind as well as the Placebo effect (see Post 45) and read Joe Dispenza's You are the Placebo. Also, do read Brandon Bays' The Journey. I believe that a dose of chronic medication to treat PD is specifically designed to generate a support system that is supposed to help most PwP. The prescription is based on an examination by a neurologist or a GP. However, it appears to be standard practice for some medical practitioners to increase the PD dosage based on assumptions as opposed to evidence from a test (blood, MRI, etc.).   

There are rare occasions when a PD misdiagnosis can indirectly result in death. The actor Robin Williams, who committed suicide, was diagnosed with PD but his autopsy, requested by his wife, showed that he had died with Lewy Body Dementia (LBD). There is a moving documentary on the impact of LBD and this actor, called "Robin's Wish...". Also, a friend in Durban whose dad was diagnosed with and treated for PD for many years actually had a brain tumor. He died from this a month ago. So, how significant is the grey area in the accurate diagnoses of us PwP? 

👀 Interesting developments 👀

NATURAL & MAN MADE  Neuroplasticity (a.k.a. neural plasticity), as indicated earlier, refers to a "process that allows the brain to receive information and form appropriate adaptive responses to the same or similar stimuli...[including] environmental, social, behavioral, and pharmacological stimuli". The broad definition of ''neuroplasticity" and 'responses to the same or similar stimuli', nowadays, includes chemical and electronic device stimuli. This is underpinned by a multi-billion dollar research and development industry. And the PD R&D wagon rolls on...

SMOKING & PD   There appears to be a "link between low doses of carbon monoxide, similar to those received by smokers, and a decreased risk of developing Parkinson's disease." This research was driven by the observation that not many smokers seem to have developed PD. So, as the "low-dose carbon monoxide may slow the onset...[of] Parkinson's disease...", the next step is to examine the effect of "orally administered carbon monoxide in patients with Parkinson's...". Hmmm...

WEARABLE SENSORS FOR GAIT FREEZE   An international machine-learning contest has resulted in the development of "a wearable sensor that can monitor and measure freezing of gait (FOG)...could replace...time-consuming video [analysis] by expert reviewers". These wearable sensors would allow artificial intelligence experts to examine FOG episodes in PwP and even assess whether or not prescribed medications were having the desired effect. 

USA PARKINSON'S REGISTRY  "...Legislature...would create a Parkinson's disease registry in New York...[requiring] hospitals, medical centers and physicians to report all cases of Parkinson's within 180 days." This PD registry already exists in four other states in the USA. It is believed that such a record will assist with appropriate treatment and research. It is also believed that industrialisation and neurotoxins exposure has led to about 90,000 US citizens to have been diagnosed with PD annually.  

DEPRESSION, ANXIETY & PD  "Anxiety is a common non-motor symptom of PD." What is interesting is the fact that anxiety is "part of the disease itself" a direct result of altered brain chemistry! While there are different forms of anxiety, they may be caused by psychological as well as biological factors, both of which are useful for Parkinson's to feed on and make us feel worse. But we PwP should guard against constant worry becoming a form of anxiety as our PD symptoms tend to get worse: I can attest to this! 

Till next time, dear reader: be safe!     

AUGUST 2024 UPDATE

Dear Reader-of-my-Blog

Between May and July 2024, my family went on a two-week holiday (so I needed to adjust to new, night-care) and I had minor surgery (a two-day hospital stay took me more than two weeks to recover), hence the delay in my new post. Do accept this as an apology, dear reader! 

Sincerely

Ari (03 August 2024)    

(53) Parkinson's, peregrine falcons & optimism...

Peregrine falcons & PD?

Peregrine falcons are birds of prey with breeding populations found on most continents except Antarctica. Its claim to fame is when in flight and diving, this falcon can reach a speed of 300kph (kilometers per hour), that is 186mph (miles per hour)! Good luck to its prey, for example pigeons, because that makes peregrines the fastest animal in the world. In 2020, a Formula 1 racing Honda reached a speed of 397kph in a test, but that car was not born and bred in the wild, was it?

  

A recent National Geographic documentary series entitled Planet Earth 2, Series 1 (Episode 6: Cities) did a deep dive :-) into the largest nesting population of peregrine falcons in the world. They are not found in some remote forest but in the concrete jungle of New York City (NYC)! I have verified this with info from another source.  

So, peregrines are thriving in a parallel universe where the height of NYC's skyscrapers offer a great view of prey as well as represent those high cliffs and their natural look out spots in the wild. The tall buildings, bridges and towers offer nesting potential while huge glass-clad buildings generate sufficient warmth during the day to create pockets of heat resulting in updrafts of warm air which peregrines use in order to glide and to conserve energy. Amazing adaptation!

It is important to note that just fifty years ago, in the 1970s, along North America's 3,000km long Yukon River area, peregrines "were not as common as they are today, their populations declined to the point of endangerment due mostly to [DDT] pesticide usage. Thanks to environmental regulations of the 1970s, Peregrine Falcons were named an endangered species, and the populations in Alaska and elsewhere have rebounded naturally over time". 

I am in awe of the Environmental Protection Agency's (EPA's) action and the results, as is evident from the growing peregrine population in NYC. Sadly, all the research and funding into the impact of pesticides or genetics or digital innovation or the many other researchable topics on Parkinson's Disease (PD) has still not resulted in human populations with PD 'rebounding naturally over time'. In my opinion, maybe there's too great a focus on the rabbit holes of research topics and clinical trials regarding PD subjects rather than solutions for us as people with PD! Let's connect these dots with the thought below.

TH🤔UGHT: if peregrine falcons can adapt from living & breeding in the wild to living & breeding in NYC's skyscrapers, then why can't people with Parkinson's adapt from being reliant on drugs to being reliant on optimism & the healing power of the mind & the body?    

The placebo effect & optimism

I dedicated Post 45 to the placebo effect but had also toyed with the idea in Post 37: an excerpt is below. 

"...we are able to control much of what the mind tells the body to do if it is done methodically and purposefully. For instance, 20 minutes of daily transcendental meditation lowers your heart rate when done correctly (I can vouch for this). Also, there is the notion of the body being able to renew itself, for instance, see Brandon Bays' The Journey and Joe Dispenza's You are the Placebo. There appears to be something built into our bodies that will regenerate it if we care to seek it out and harness it. I have also written about neuroplasticity (see Post 28) in a similar context."         

My earlier TH🤔UGHT drew attention to NYC peregrines adapting to a new environment and I wondered why people with Parkinson's relied on pharmaceutics rather than adapting to, for instance, optimism and the natural healing power of the mind and the body. Generally, we know so little about medical science that we accept medical doctors' diagnoses and prescribed remedies. If the General Practitioner can't assist, then we're referred to a Specialist for a remedy. And we accept such remedies because, generally, that acceptance is based on trust. 

So, why do more people not trust alternative medicine for common illnesses? Maybe we desire speedy remedies, and a homeopathic or an Ayurvedic approach to healing takes time. Fast foods? Fast cars? Fast healing?

Let's return to this attitude of optimism, that, in my opinion, is another alternative "medicine" which facilitates the provision of remedies for many illnesses. A recent piece in Psychology Today (PT) (November, 2023) entitled "Is Optimism the World's Most Powerful Placebo Effect?" presented an overview of optimism. This positive attitude and state of mind has been shown to influence one's "beliefs, expectations, and bio-behavior changes, [because] it's a type of placebo effect". And no prescription or medical aid is required! 

The PT overview states that optimism is "a positive attitude or the ability to see the bright side of a situation...[expecting] positive future outcomes even when difficulties arise." Unfortunately, placebo effects are often misunderstood and experts often mistakenly believe that "they are limited to medicines or psychoactive substances...and [that] they are imaginary."

What has been discovered is that placebo effects produced on the inside of the body, i.e. as a result of one's positive attitude, are "just as strong as those produced by conventional medicine and treatments...from an outside source". When I feel intoxicated after drinking a non-alcoholic beverage, I am not merely imagining that I am tipsy but something is actually "manifesting chemically inside [my] body": I've experienced this! 

The underlying question posed in the November 2023 edition of Psychology Today, is why not indulge in some positive thinking as it can "up- and down-regulate hormones and neurotransmitter activity, affect pain sensitivity, impact gene expression, alter brain function...". Dear reader, would you consider a long-term remedy for PD and adapt to becoming a positive thinker? This is the power of a placebo! I've been practising this form of "alternative medicine" since my PD diagnosis in 2013 and I have been constantly surprised. 

Parkinson's Disease or... 

Recently, I came across an informative piece called "Conditions that Mimic Parkinson's" published by the Parkinson's Foundation in the USA. It lists at least six conditions that, superficially, present as PD but are actually subtle variations of it. Besides these six, four more are listed by a UK organisation.

Parkinson's UK, when unpacking "What is Parkinson's Disease" states that Parkinsonism is "an umbrella term used to cover a range of 10 conditions that are similar to Parkinson's." So, besides the normal Parkinson's that I thought I knew - this piece refers to my condition as (1)Idiopathic Parkinson's (idiopathic because the cause is unknown) - there are 9 other variations: 

• (2)Vascular parkinsonism; 
• (3)Drug-induced parkinsonism; 
• (4)Multiple system atrophy; 
• (5)Progressive supranuclear palsy; 
• (6)Normal pressure hydrocephalus; 
• (7)Various tremors, including essential tremor; 
• (8)Dementia with Lewy bodies; 
• (9)Corticobasal degeneration; and 
• (10)Wilson's Disease.     

QUESTION It is reasonable to assume that after a patient's diagnosis, a medical doctor *and/or specialist would have to prescribe specific medication for that diagnosed condition. (*I am aware of a few people with Parkinsonism in small towns in South Africa being treated by GPs as there are no Neurologists in the area. What medication is being prescribed and for which one of the 10 conditions?)  

Conclusion

If I do not do some form of physical exercise daily then I become stiff, I tend to festinate and I lose confidence in myself and my physical ability! This used to be a regular scenario over weekends in the absence of my caregiver who's here only during the week. Since 2023 I have also started walking on my own in the afternoons and seldom use my walking stick to walk. (Picture: 20 April 2024 after Parkinson's Annual Walk.)

I am still over-analysing myself, my PD and my abilities. In the absence of PD treatment or advice from a neurologist, this approach gives me a sense of purpose and fuels this blog. 

I also feel a sense of purpose when planning a Blog Post and a sense of accomplishment when it is final draft is published! Since March 2020 there have been 9249 views, worldwide, of my 52 posts. The most recent readers (viewders?) in 2024 are from Singapore, China and Japan. 

And for the PD I am still only taking three Ayurvedic medicines a few times daily washed down with extra-large cups of positive thinking. Plus exercise, lots of music and my favourite TV programmes. My mental exercises are online and consist of weekly Lumosity games as well as daily word games (Wordle, Word Challenge) and Solitaire.  

Like the NYC peregrine falcons, I believe I am adapting...till next time, dear reader.

 

(52) Parkinson's: connecting some dots...

Dear reader, I have occasionally weaved strands of others' experience of Parkinson's Disease (PD) into my own Blog posts. So, although I have an idea of a post's content when I start, I seldom have a view of its end, as illustrated in the picture above. I connect the dots so a clear picture emerges. Well, the spark for this story was created by a friend (thanks, RobinT) who wanted specific info about PD. While researching his "dot" a few others jumped out and post 52 was created.   

PD impact

According to the Parkinson's Foundation, USA, the following PD statistics are significant:

• Men are more likely to develop PD than women; 
• There are almost 1 million people in the USA with PD;
• Annually, nearly 90,000 US people are diagnosed with PD;
• Worldwide, over 10 million people are living with PD;
• The annual US cost of PD (including lost income) is about $52 billion per year; and
• PD medication is an average of $2,500 (±R50,000) per person per year in the USA.      

I have shared these statistics because some countries, like the USA, value the health of their workforce more than some others do. And what the US has achieved for people with PD through the Michael J. Fox Foundation (MJFF) programme is extraordinary: acute PD awareness at public and government level and a billion dollar fund to support and drive PD research and development. Take many bows, Michael J. Fox!

 

But, not all countries have a PD research and development initiative the size and commitment of the MJFF. For instance, Parkinson's issues requiring chronic treatment in South Africa, point one in the direction of a neurologist at either a public hospital, private practice or to some form of holistic health practitioner. National statistics or support is not easily accessible or available and I would be surprised if local clinics could assist. Also, little appears to have been done to dispel the stigma attached to those with PD in some South African communities. Based on US statistics, the cost of PD treatment per person in South Africa would be between R25,000 and R50,000 if you knew where to go and could afford it. 

   

PD: some causes & treatment

Without the equivalent of a MJFF and a government drawing public attention to the links between movement disorders and chemicals, PD will never be taken seriously. Ongoing research into causal links between incidence of PD and the presence of pesticides, such as a 2020 investigation by Shrestha, et al., for instance, suggests "an association between general pesticide use and Parkinson's (PD)." This should be an issue worth noting! In a 2024 study, "pesticides and herbicides used in farming [were linked] to Parkinson's Disease" in a specific region of the USA. This research names 14 pesticides in parts of 13 named US states. A weed killer linked to PD has yet to be banned in the USA. Are there consequences?

A cynical side of me believes that any pesticide research will result in minimal consequences but greater "resistance" by those manufacturers and more work for their legal staff. There could also be opportunities for what I regard as the PD over-the-counter "treatment industry" and anecdotal evidence, especially where there are multiple applications, such as with CBD oil. Surgical 'treatment options', however, are more complex and validated through research.

For example, I could have surgery involving deep brain stimulation (DBS), where implanted electrodes in my brain and a connected neurostimulator in my upper chest area, together, attempt to regulate some of my movement disorder symptoms. Whether my 'treatment option' is invasive, such as deep brain stimulation or non-invasive, such as ultra-sound therapy, the outcome may be similar: I may have to supplement my 'treatment option' with pharmaceutics, that may have side-effects on me and my PD. Sigh!

On a positive note from the DBS research world, a recent (2024) analysis that is entitled Revolutionizing Treatment: Breakthrough in Brain Circuit Mapping... reported the following and here is an excerpt.

"By analyzing data from the 534 DBS electrodes implanted in 261 patients across the globe, researchers have pinpointed the dysfunctional circuits within the frontal cortex associated with each disorder. This meticulous mapping has not only revealed the optimal networks for therapeutic targeting but also demonstrated partially overlapping circuits across these conditions. This suggests that interconnected pathways are disrupted, underscoring the complexity of brain disorders and the need for precise treatment approaches."

Impressive! The above observation and analysis on "pathways [that] are disrupted" is useful because of the broad scale of their sample (261 patients worldwide) that has led to a valuable outcome. In the same analysis is the further observation in which the DBS treatment analysis has been refined. It is cited below. 

"Initial findings from this study have already led to significant improvements in patients, including a young woman with severe OCD. These outcomes highlight the transformative power of understanding the brain's circuitry in developing more effective and personalized treatments."

Obsessive compulsive behaviour (OCD) and even Attention Deficit Hyperactivity Disorder (ADHD) are mental health conditions resulting from "dysfunctional circuits" that are costly to treat. I cited the Parkinson's Foundation statistics and the astronomical costs at the beginning of this post: the annual cost of PD treatment in the US is "$52 billion" as well as mentioning the sophisticated levels that DBS treatment and analysis have reached. But let's explore another connection: one between ADHD and PD and their respective treatments.

A significant 'treatment option' for PD in adults is the use of Ritalin (also known as methylphenidate or MP) prescribed primarily for ADHD in children. One research study (2004) on the use of Ritalin to treat Parkinson's Disease indicates that it may improve "cognitive, affective and motor deficits in PD". Another 2009 study (...Ritalin may improve Parkinson's Symptoms), indicates that Ritalin "bolsters the effects of levodopa". The Davis Phinney Foundation newsletter in 2018 states that Ritalin could be "use[d] for fatigue in Parkinson's", the latter being significant as fatigue is a serious issue amongst people with PD! This provides a useful 'treatment option'.

Concluding thoughts

Dear reader, realistically, I cannot really conclude anything constructive except to offer this observation. If finding secondary applications for some pharmaceutics (such as MP/Ritalin) with which to treat PD is the job of PD research, then how is that information supposed to filter down to a clinic healthcare worker or holistic medicine practitioner in South Africa. There is no national infrastructure for movement disorders (like the MJFF) and little national support for us people with PD. I am reliant on the goodwill, support and expertise of South African non-profit organisations such as Parkinsons ZA (weekly meetings) 👍 and Movement Disorders Support (online support) 👍.

So, if 'treatment options' such as Levodopa or an Ayurvedic substance or a photobiomodulation patch work for us, then we should stick with it and be grateful for the benefits, right? If it doesn't, then we ought make detailed personal notes before changing our medication/neurologist/diet/lifestyle/exercise/pet/😐/etc. No-one is really sure about how to treat me, an individual person with Parkinson's, bar applying their general, specialist knowledge, involving a "gold standard" of some sort touted by some company watching their profit margins. 

Till next time, dear reader...

Ari Naidoo

BORN: 30 March, 1952 

PD DIAGNOSIS: 2013 

2020: started this blog

2024: struggle to type/walk/dress/bathe/balance (Sigh!)   

(51) Parkinson's Disease: challenging PD with a PhD (PART 2).

Overview, Post 50 (PART 1) 

"...if I could challenge PD with a PhD 😊...what would be my plan of action? Could I, as a practitioner researcher, eventually generate personal theories based on my own observations...the perceived warrior training is below."

Warrior training challenges 1. and 2. have been covered in Post 50, while 3. and 4. are below. 

 

1. Could I strengthen my mental capacity in order to challenge my PD before my retirement? (←see Post 50)
2. Would improved physical ability help me attack my PD before my retirement? (←see Post 50)
3. Could I shield my state of health and "slow down" my PD before my retirement? 
4. Could I generate personal theories in support of my experience as a PD warrior?   

CONT. Warrior training 2013-2017 

3.  Diet/Health 

What I eat nowadays has been influenced by my childhood and life experiences so shifting my diet was realistic as there was a context (my PD), there was personal motivation (improving my PD) and I was also dealing with an enlarged prostate. I have become a selective eater. Most of what I eat is based on what my left hand can manipulate, that is, both the type of food and type of cutlery. For instance, if pasta is on the menu then I would always opt for the shorter penne rather than the longer spaghetti.

 

So, I have made the following choices: *opt for white meat; *opt for white cheese; *opt for low GI bread; *opt for lactose-free milk; *opt for dark chocolate (although milk chocolate keeps me happier); *drastically reduce my alcohol intake; my wife *switched to cooking with coconut oil since 2014, and has started baking with Atta flour. I believe they are all helping me a little bit (no clinical trials, though :-)!

In addition to PD I have low blood sugar and have stopped taking sugar in my daily cereal *opting instead for raisins. Also, I *opt for honey in my morning tea and twice-weekly coffee. I used to look for a chocolate to top up low sugar levels, but nowadays I *opt for dates or juice and snacks are nuts, fruit and biscuits.  

  

I have complete faith in the opinion of my GP and local pharmacist. While I tend to explore alternative approaches, I am wary of anything too prescriptive unless it makes sense to me. For instance, my blood type and diet might be connected and subsequently influence what I should eat and drink, but I am also keen on healing myself in an Ayurvedic way which would mean balancing the three forces or doshas. Ultimately, it depends on what I want to achieve, why I want to do so and how? 

You may choose to regard me either as fickle or realistic. 

4. Personal Theories

A living educational theory, according to Jean McNiff, is "the idea that each person is capable of offering  evidence-based explanations for how they live, as they attempt to exercise their educational influences [in order] to engage critically with their own thinking, and seek to influence the thinking of others in an educational way, a way that nurtures further learning." 

I subscribe to the McNiff idea that as an ordinary person, I am able to offer 'evidence-based explanations for' how I live. This is in contrast with what many prefer to do, which is to subscribe to the notion of a "great man" theory and subscribe to the actions of a leader in the field of research. Throughout history, a male leader (e.g. Plato, Napoleon, Einstein, Bose, Mandela, Obama, etc.) who had excelled in his field, generated large numbers of admirers wanting to emulate their heroes. This was made easier to access when their achievements were reproduced in print format. Marie Curie and Jane Goodall and many other women are among those extraordinary leaders.

Let's revisit the idea of McNiff's "evidence-based explanations" and my own personal theories. When I registered my PhD in 2001 my focus was to develop an instrument to assess writing. In a nutshell, writers should be able to assess and correct others' writing according to clear criteria. Once those criteria had been internalised and writers had tested others' writing, it might be possible for the writers to assess and correct their own writing. I also decided to include, as evidence, my own observations of issues in language and writing since 1985, rather than draw exclusively from recognised theory in applied linguistics. That was my way of avoiding "great man theory". 

In this post I will contribute to the rise of small man theory in PD :-).   

Ari's PD Theory

A theory, as I understand it, is a statement of a problem followed by a possible action/solution under specific conditions. The problem should be clearly stated so that the action/solution may be repeated by others when this theory needs to be tested. Let's try to apply this to me and Parkinson's Disease.

PD THEORY: FOOTWEAR (SEE POST 6, April 2020)

NB My Parkinson's started on my right side from around 2012 and I was diagnosed in 2013.

PROBLEM:  In 2020 I stopped wearing shoes, as I struggled with socks and laces, so I only wore sandals. Leaning against a wall, I would balance on the left leg, then point the right foot in the direction of the back of the sandal before sliding my right foot into it. However, after a few months, my right foot started to move in slow motion and then 'freeze', so I was unable to slide my right foot into the sandal. During the 'freeze' action that would last a while, I would become irritated and the resulting frustration would simply reinforce inaction. Nowadays, I need to be seated when putting on footwear. 

(CONCERN: I was concerned that, after regular occurrences, the slow motion action would be reinforced and then stored as the new normal during any attempt to wear sandals. Also, the action could gradually slow down to a 'freeze'!) 

SOLUTION: 👍 One morning, out of sheer frustration, I shut my eyes, cursed loudly and my right foot slid slowly into the right sandal without my freezing! A moment of serendipity! I discovered that I could slip on my sandals simply by keeping my eyes closed: Wow!

➤ CONCLUSION: The action of closing my eyes helps me to slip my feet into footwear without 'freezing'!

PD THEORY: SITTING/STANDING

PROBLEM:  Moving smoothly from standing upright, then into a seated position, and back to a standing position has become a challenge. When I am at home in a chair with arms (or trying to get into the passenger seat of our car), it is possible to get seated and, within a few seconds, to stand up again. However, after being seated for an hour or so, either at home or in the car, it is not possible for me simply to stand up, as my body has relaxed into a seated, 'freeze' position. During the 'freeze' action that sometimes lasts up to a few minutes, I used to become irritated and the resulting frustration would reinforce the inaction. At home, one solution is to ask my wife to pull my body forward so I can stand up. (If I'm in the car it is complicated, because if it's parked on a slope or at an angle or in traffic, then I have to wait until I am relaxed before attempting to alight. This is the one exception where my tension overrides the effects of closing my eyes.)  

(CONCERN: I was concerned that, after regular occurrences, the freeze motion action would be reinforced and then stored as the new normal during any attempt to stand up after a freeze.) 

SOLUTION: 👍 On one occasion during a chair-seated freeze, I shut my eyes, and was able to lift myself up without assistance. I discovered that closing my eyes while frozen in a seated position was the equivalent of pressing reset on a computer, the same as putting on sandals. With my eyes closed, I was able to gradually focus on moving my legs, shifting my feet and bottom forward and off the seat, before slowly standing up. (Recently, we invested in a Willowbrook recliner that allows me to sit upright, to recline, to sleep and also to take me from a seated to a standing position. A clever piece of engineering!)  

➤ CONCLUSION: The action of closing my eyes helps me to stand upright after being 'frozen' in a  seated position!

PD THEORY: BOWEL MOVEMENTS 

PROBLEM:  My regular morning bowel movement started to become "irregular" about three years ago when my core muscles started to weaken. This could be the result of Parkinson's weakening my bowel wall muscles making it more difficult to pass a stool. As a result of making myself tense as well as trying to force the movement, I was in danger of creating excessive strain which could lead to a hernia, according to my urologist who was treating my enlarged prostate at the time. I have a relative who's had hernia issues and it appears to become complicated as one ages. 

(CONCERN: I was concerned that, after regular occurrences of straining myself, I could develop hernias. 

SOLUTION: 👍 Again, serendipitously, I started to (i) shut my eyes and to relax and (ii) to exhale slowly. After a few times it worked: I was relaxed and had relearned how to have a bowel movement. The exhaling slowly appears to be what helps me with my morning movement. I have also learnt that if nothing happens then I simply ignore it until my bowel is ready, which is often later that same day.

➤ CONCLUSION: The action of closing my eyes helps me to have a relaxed, regular bowel movement!

Ari's PD Theory & Observation

PD THEORY: If I am at home, seated, and unable to perform a task*, then I should close my eyes, relax and try again. (* putting on sandals; standing from a seated position; bowel movement).

OBSERVATION 

My Parkinson's Disease (PD) slows down my dopamine production which has a direct impact on my muscles. As PD is regarded as a movement disorder, then my muscles are directly affected. This means that muscle memory "a neurological process that allows you to remember certain motor skills and perform them without conscious effort." will be challenged. What was a normal action, e.g. putting on a sandal, is now disrupted by dopamine reduction. As a person with PD, I was unable to put on the sandal. 

A THOUGHT: So, if closing my eyes allows me, a person with PD, to be able to perform the action of putting on a sandal, then it is possible that muscle memory requires my eyesight to initiate that "action without conscious effort". Therefore, if my body's biological software needs a workaround to bypass the old-normal memory, i.e. pre-PD, then removing my eyesight from the procedure appears to create a new-normal memory pathway while I have PD! There may even be neuroplasticity at work here :-). 

What do you think, dear reader: Have I challenged PD? Till next time, be safe. 

PS a Lancet journal series dedicated to 📖Parkinson's Disease📖 has just been launched 

(50) Parkinson's Disease: challenging PD with a PhD (PART 1).

First PD "diagnosis": 2013

My first visit to a neurologist was in 2013 in Pretoria. My GP recommended it, because since 2012 I had complained of a tremor in my right leg whenever I urinated. The neurologist subsequently requested an MRI scan. 

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

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

Early daze 

The neurologist's 2013 diagnosis based on my walking got me thinking. I was at the pinnacle of my career after 36 years in higher education. I had 13 years' experience in the theatre (M.A.), 10 years in computer-assisted education (M.Ed.) and after 7 years' reflective practice I had developed an instrument to assess writing (D.Ed.). Could I draw from this higher education experience to fight my PD? Maybe...

Also, I was a "practitioner researcher", generating personal theory from my actual practice (my PhD has this evidence). Could I challenge PD with a PhD 😊? Could I, as a practitioner researcher, eventually generate personal theories based on my own observations of PD? Maybe...

Many challenges emerged, based on the familiar (stuff I would have known for a long time) and with what I was comfortable (stuff that would not lead to confrontation). If I were to be a PD warrior, then there appeared to be four, proactive challenges before my retirement in December, 2017. 

 

1. Could I strengthen my mental capacity in order to challenge my PD before my retirement?
2. Would improved physical ability help me attack my PD before my retirement? 
3. Could I shield my state of health and slow down my PD before my retirement? 
4. Could I generate personal theories in support of my experience as a PD warrior?   

Warrior training 2013-2017

After the "walking" diagnosis I decided to avoid taking PD prescription drugs for as long as possible and to actively seek alternative approaches to fighting my PD. I would try to use my PhD to fight the PD for as long as possible. Let me unpack two of the four areas of warrior training in this post. 

1.  Mental Capacity 

I started to have short-term memory lapses in my mid-fifties. I came across colleagues with similar issues and we often talked about the challenges associated with ageing and how it could impact our own teaching and learning. We wondered about using technology to help our tired brains, so, instead of typing maybe we should use "Siri" or "hi Google". However, we all agreed that this could lead to greater reliance on technology and less on brain power, so that was not a solution but likely to have the opposite effect. 

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

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

PECHA KUCHA This is a reductionist technique developed in Japan to reduce a paper's length or to introduce new concepts in under seven minutes. A Pecha Kucha limits a presentation to 20 PowerPoint slides each on a timer (20 slides X 20 seconds per slide = 400 seconds per  presentation)! Attached is a link to a Pecha Kucha template. I have presented two papers as Pecha Kuchas and the one on Boyer (2013) is available online. This form of presentation focuses on key points, avoiding detail. In 2014 I was requested to develop a training programme to prepare staff to convert their papers into Pecha Kuchas for an international ICDE conference in 2015. The programme continued till 2017 and was a confidence booster for me!

14 November 2023

HANDWRITING Up until my retirement I always enjoyed writing by hand and I wonder what impact this had on my confidence: could it have affected my fight with PD? In September 2022 I published Post 36 of my Blog in which I shared thoughts on handedness and some samples of my handwriting. In November 2023 I wrote my granddaughters' names on three envelopes (see picture). I did not rule any lines and used a felt-tipped pen. As a 71-year old person who is PD drug-free, I still enjoy handwriting!

It is significant that I type slowly with my left hand and complete 95% of my daily activities with my left too but, occasionally, I am still able to write legibly with my right hand. Hmm! PD only has a negative effect on my handwriting, when I have to fill out a full-page form by hand using a clipboard!! 

Apparently there is a lot going on in the brain whilst we're writing. There is also useful research on note taking and the advantage of handwriting compared to a keyboard, dear reader. 

 

2. Physical Ability.

Most people with Parkinson's know that on multiple fronts, exercise can "help both motor (gait, balance, strength) and nonmotor (depression, apathy, fatigue, constipation) aspects of Parkinson's disease as well as secondary complications of immobility (cardiovascular, osteoporosis)" (van der Kolk & King, 2013). I agree: the more I avoid daily exercise, the harder it is to fight against my PD. Sigh! 

Between 2013-2017 I walked at work daily at lunchtime, used stairways 90% of the time, daily, between the third floor (my office) and the sixth floor (seminar room) and monthly I used the stairs between the third and the eleventh floors (Director's office). In 2016 I discovered if I strapped wrist-weights above my ankles they would "remind" my feet to move when I walked at work. I shared this with other people with PD.   

A few friends who were diagnosed with PD in 2018, have managed to maintain regular, intense exercise with swimming and long distance hiking regimes while on PD medication. I stopped power walking in 2015, retired in 2017, stopped going to the gym in 2019 and stopped driving in 2022. Now I go for short walks and cycle indoors twice weekly. My exercise habit is broken and I have weakened significantly. 

The last two warrior training observations will appear in Post 51. Till then, Happy Holidays!

(49) Newly diagnosed with PD? Here are my A,B,C's!

A,B,C's of Parkinson's Disease

If you were recently diagnosed as a person with Parkinson's Disease (PD), then in this post I provide some basic info about PD in the context of three themes. Remember, you must see a neurologist to make sure that you have a form of Parkinsonism...

I was diagnosed with PD in 2013 and worked till 2017 when I retired. In all the posts in this Blog since early 2020, I have shared personal views and experiences of my own parkinsed life and presented events and experiences in the lives of other people with Parkinson's. Within the content of these posts there are three possible themes regarding my personal interpretation of Parkinson's Disease (PD) and its ongoing impact on me. They are: 

• what is (the reality of a Parkinson's diagnosis);  
• what should be (the possibility of being cured in a reasonable period of time); &
• what can be (what is available outside the bounds of clinical trials). 

If you were recently diagnosed or suspect you might have PD, then here is some basic info.

➤  WHAT IS...the reality of a Parkinson's diagnosis! 

Once you suspect you might have a nerve-related problem then do get your family doctor to check you in order to recommend a specialist. It is critical that you are given expert opinions. Parkinson's affects everyone differently so it is ideal, if possible, to get a few diagnoses. If you are in a small town without a specialist then it is important to look for one in the nearest city. The decision to accept treatment via a specific medication must be an informed one as it is probably going to be with you for most of your life. 

Once diagnosed with PD, then your neurologist will prescribe pharmaceutics (drugs such as Levodopa or Sinemet; there is currently a 2023 clinical trial into a cough medicine, Ambroxol). You could also consider the possibility of Deep Brain Stimulation (DBS). There are also people with PD who swear by alternatives such as a cannabis extract (CBD oil), mostly based on useful anecdotal evidence by some, rather than on clinical trials. So, get as much info as you can from as many sources as possible.     

The internet is very useful. It is a virtual book without covers, providing an endless supply of information that is meant to inform you. But, the sheer mass of information it churns out can also confuse rather than inform. When I type "Parkinson's Disease" into a search engine like Google, then it yields about 211 million matter-of-fact results that is overwhelming, while typing "Parkinsonism" provides a mere 21 million results. However, if I search for "Parkinson's 101" then I will find five short paragraphs on the Fox Foundation website providing an overview of PD that's not meant to shock but to inform, including a single link to their useful Parkinson's 360 toolkit. This is one of many useful sites out there. Also consider other search engines that do not track your searches, such as Duckduckgo.

Now, the history of PD is complex and speculative with many possible and varied causes.  Below are  some thoughts to consider regarding why I have PD. 

• CAUSES Some causes and symptoms are described here, while others are based on assumptions regarding chemical exposure (paint, crop spraying, dry cleaning chemical), *head trauma  (accident, American football), and hereditary transfer (rare). (*I had a head trauma when I was five and in 1999 we experienced the loss of our teenage son.)
• COFFEE While coffee can have a positive effect on the brain and neural pathways, unfortunately, there is also the issue of pesticide residue on beans. {For my own use I look for organic coffee beans or "Nespresso" pods and hope for the best.}
• PD STAGES There is much written about the 5 Stages of Parkinson's. The stages are useful as a description of disease progression, but also dependent on the person's age, gender, quantity and type of prescription drugs, etc. 

The speculation above regarding possible causes of PD is not a definitive list but some possible considerations, especially, in my case, the issue of *'trauma'. 

➤ WHAT SHOULD BE...the possibility of being cured within a reasonable time!

Around 1000 BC in the East, the "L-dopa" plant extract was first used to ease symptoms of "tremors". During the early 20th century in the West, it was used to ease symptoms of the "shaking palsy", named PD, after Dr James Parkinson (there is a link to his original 1818 essay below in PD "SIGNS"). 

However, the nature of the human body's structure and accompanying levels of protection, has made it difficult, for instance, for PD treatment regimes (i) to find the apt dosage and (ii) to cross the body's blood-brain barrier. This is my understanding of why we struggle to find cures. Sadly, it is also possible that this amazing blood-brain barrier has been compromised in the case of people with Parkinson's.

If South Africa was a first world country, then we could have expected the prevalence of PD to have been diagnosed and treated at both private and public health care facilities. There would have been a lobby at government level to investigate and minimise the causes of PD and, in the long-term, to attempt to eradicate it. Also, there would have been attempts to document all cases of PD in order to have statistics to inform a country-wide intervention. Sigh! This is not the case. And currently in Durban, Kwazulu-Natal, there is evidence of only one initiative providing support to people with Parkinson's.              

➤ WHAT CAN BE...available alternatives

What follows is neither an exhaustive nor a definitive list but my own collection of alternatives for you to try. 

INTERNATIONAL RESEARCH 

•  If you're curious about your own symptoms in relation to others in the world then consider joining Fox Insight. A comprehensive survey (about 1.5 hours max to complete) will then be sent to you to complete online a few times a year. It is a good way to keep track of your symptoms as each survey is similar. Michael J Fox (Back to the Future movies) is an actor who started a Foundation and has raised over a billion dollars in the USA towards PD research. He was diagnosed with PD in 1991. He has also written a few books and I can recommend No Time like the Future where he shares insights into his condition.

PD "SIGNS" 

• A tremor is not necessarily a sign of PD as there is, as a result of ageing, an essential tremor (that also differs from an intention tremor) and that is similar to a PD tremor but not exactly the same. A misdiagnosis with accompanying meds, unfortunately, could result in long-term damage and unpredictable side effects. 
• In the early 1800s, a British surgeon and palaeontologist, after extensive observations, published an Essay on the Shaking Palsy. The neurology world was so impressed with James Parkinson's observations that they named the disease after him! This essay is also a useful read.
• Heavy legs or lower limb weakness might, over time, become an issue.
• Dizziness or fainting (and slowed movements or bradykinesia; facial masking; drooling; etc.) are some of the standard possibilities with the onset of PD.    

ALTERNATIVE APPROACHES & EXERCISE

• The Davis Phinney Foundation blog is a good place to start when looking for alternative exercises and diet to counter PD.
• Read John Pepper's amazing PD story - he's in his eighties and lives in South Africa - I met him in April this year and he still looks really good.
• Try Gentle Chair Yoga  AND 5 minute Tai Chi for beginners.  
• Check out Dance for Parkinsons (South Africa) and the mother body website in New York for useful videos. (NB if you're close to Pretoria they have a weekly Dance for PD class.)
• Find a reputable biokineticist near your home and go as regularly as you can.
• Have regular foot/leg and shoulder/arm/hand massages to improve the circulation. It helps!
• Diet for PD - one interesting point of view.  
• An Ayurveda approach to PD - it's a slow process but uses a non-pharmaceutical approach in treatment so there are no side-effects of which I am aware.
• My wife switched to only cooking with coconut oil 10 years ago - there's no clinical trial but :-)...
• Read my Blog for tips and tricks that work for me.
• Where possible, get rid of negativity in your life. Make simple choices, like avoid watching TV programmes that irritate you and listen to more of your favourite music. I start every day with a few hours of music during breakfast. I also subscribe to a weekly SA blog of positive stories at The Good Things Guy. 

CONCLUSION

This post (49) was inspired by BB in Mpumalanga: thank you, Bennie!

After choosing to fight PD in a drug-free way since 2013 - the year of my diagnosis - I am still constantly tired, often frustrated by my tremors and poor balance, and remain a moody pensioner with Parkinson's. However, I still have a caring wife, daughter and three granddaughters, a caregiver and 71 years of great memories that make this life worth it. And there's this monthly Blog post that keeps me 😊.

Whatever route you decide to take, go well and God bless you.