(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