(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.

 

(39) Parkinson's advocacy: persistence & results

Being diagnosed with a life-altering movement disorder like Parkinson's Disease (PD) is physically exhausting because it represents, in my case, a three-pronged attack: (1) testing my ability to cope with a movement disorder, forcing me (2) to reroute my reality to deal with a new normal and (3) to adapt & attempt to slow down this degenerative disease. <ari.naidoo@gmail.com>

The indefatigable Fox!

I have only had PD for ten years and in the past five years have had four falls (the last in February 2022) that did not result in serious injuries. I cannot imagine being Michael J. Fox and first to have been in denial for seven years and then to fight PD for another 24 years! During the latter period he has had his fair share of PD medication as well as serious injuries sustained during falls, some resulting in major operations. 

On a positive note, his vision and advocacy for PD since 2000 has led the Michael J. Fox Foundation (MJFF) to raise a staggering $1,5 billion to fund Parkinson's research into cures, early diagnosis, alternative therapies and accompanying support. The Foundation has also played a role in the recent Parkinson's lobby in the US Congress, where there is now, for the first time, a National Plan to End Parkinson's Act, sponsored by both a Republican and a Democrat. This plan, if adopted, will attempt to slow down the human suffering of increasing numbers of US citizens and decrease the billions of dollars spent annually to fight PD.   

As far as notable awards are concerned, in 2010 Fox received an honorary Doctorate in medicine from the Swedish Karolinska Institutet. This was for raising funds for PD research via the MJFF and for generating an awareness of PD. Most recently, he received an honorary OSCAR: the Jean Hersholt Humanitarian Award presented to him in November, 2022 for his humanitarian work and fight against PD.    

USA and RSA

Michael J. Fox's persistence has carried him through a constant fight against his own symptoms since the 1990s. His firm belief in a bigger picture, has led to the success of the MJFF to raise funds and broadcast PD advocacy since its establishment in 2000. It started as something personal and has bloomed into an initiative embedded in the idea of a public good, available to all Americans. 

I have to remind myself that the USA is a first-world country with a different set of advantages and accompanying challenges for a person-with-Parkinson's (PwP) compared to us in South Africa. In 2020 there was an estimated 1,073,894 PwPs in the USA. I wonder if such a specific estimate of PwPs has ever been made in South Africa besides general research and data on PD in Africa (this article also describes stigmas related to PD)? Below is an excerpt on PD stigmas followed by two anecdotes on PD. 

According to a 2015 document on the MJFF website, regarding The Stigma of Parkinson's Disease, 

"...aspects of Parkinson's -- visible and invisible -- can be misinterpreted, causing a stigma sometimes associated with neurological disease.  Slowness of movement or speech may be perceived as intellectual disability, imbalance as intoxication, masked facial expression as an unfriendly demeanor, and tremor as nervousness. Internalizing these judgments or trying to hide the disease to avoid discrimination only make symptoms worse."

ANECDOTE 1 A friend - a PwP - shared a disturbing story of a KZN supermarket manager, a fortnight ago, who accused him of being intoxicated because of his imbalance and slurred speech. It was the first time I had heard, first-hand, of such an ugly and painful experience in KZN: a customer was merely querying an issue regarding his purchase. Such insensitivity might occur in other provinces of South Africa, too. 

ANECDOTE 2  In 2020, while preparing to sell our Gauteng flat before moving to KZN, a contractor noticed my tremors. When I described my PD and explained that I was part of a support group he was surprised. He then explained that his younger brother displayed such symptoms for years but it was regarded by his family as some form of "evil magic" and they had kept him at home. This appeared to be young onset PD! I believe there may be many cases like this across the country but they are housebound because of this stigma. There may be a similar scenario in South Africa for those with epilepsy. 

Back to the bigger picture.  According to the Davis Phinney Foundation, there are over a dozen different types of Parkinsonism, an "umbrella term to describe a group of neurological problems", yet only about 10-15% constitute actual Parkinson's Disease as described in my Blog. The six types of Parkinsonism listed (besides PD), are:

• Drug-induced Parkinsonism; 
• Dementia with Lewy Bodies;
• Multiple System Atrophy;
• Progressive Supranuclear Palsy;
• Vascular Parkinsonism; and
• Corticobasal Degeneration.  

I am of the opinion that we are not vocal enough in South Africa regarding the complexity, treatment and identifying this neurodegenerative disease and that PwPs should make PD more public! There is a Presidential Working Group on Disability - established in 2019 - but their focus is not on advocacy of persons with disabilities but on their economic empowerment, as repeated in President Ramaphosa's 2021 address. So, we PwPs, require concerted advocacy to raise public awareness of Parkinsonism to ensure our rights. And using the MJFF approach, persistence will be the key to any success.

KZN Parkinson's support

(Now, I am going to repeat myself.) Between 2018-2019 I was part of a weekly Dance for Parkinson's  (DfP) group in Pretoria :-). I also belonged (and still do) to an online support group called Movement Disorder Support SA. When we moved to KZN, in 2020, I found a branch of the DfP but located a two-hour return drive away from Durban :-(. There were websites for two PD support groups in Durban but their telephone numbers still "do not exist". I also attempted to start a support group through the laser therapy clinic (see Posts 10, 11, 13, 14) but that did not materialise.

Then, in September 2022, a friend sent me a newspaper article of the launch of Parkinsons ZA (PZA) in Durban. I was excited! Their weekly occupational therapy workshops were going to be held in a venue five minutes drive away from me. To date they have run 15 two-hour workshops covering issues related to mobility, sleeping, speech, diet and writing for a PwP. Each workshop starts with a good warm-up and ends with cool-down exercises. It's been a godsend for the approximately two dozen regular participants.  

The task ahead for PZA in 2023 is to focus on fundraising and advocacy. They also want to run workshops in other parts of Durban and the surrounding areas. Maybe they'll follow the MJFF route and have successful short, medium and long-term strategies and reach greater numbers of us parkinsed people. 

   

Conclusion

I started the post referring to my three-pronged strategy. I will return to it in my next post. I wish you well over the next few weeks, dear reader. Be safe!