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Thursday 21 March 2024

(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!)   

Saturday 20 January 2024

(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

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 

Sunday 17 December 2023

(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!

Tuesday 14 November 2023

(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. 

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" 
  • 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. 

Tuesday 17 October 2023

(48) Parkinson's lifestyle: ball's in our court!

Parkinson's impact

As you might know, dear reader, Parkinson's Disease (PD) thrives on my inactivity, which then leads to my being tired and consequently confined to a chair for extended periods. These long periods of inactivity result in my muscles forgetting how to "work" when I need them to do so. And, yes, lowered levels of dopamine only make my muscles even more inactive. Sigh!

In contrast, athletes preparing for a game either at high school or for a national team - whether for 180 minutes of tennis or for 80 minutes of rugby - will need much heightened activity and training to perform consistently at competition level. One should also prepare for injuries, especially if they are part of the risk of playing that game! Research has found that some sport - such as American football - can result in long term damage that eventually can lead to parkinsonism and PD.

Certain lifestyle factors may have a positive impact on PD, preventing motor and cognitive functions from getting worse. Moderate consumption of coffee is able to slow the progression of PD. One study claims that dark roast coffee beans are useful in preventing Alzheimer's and PD. There are in-depth studies on caffeine, such as research by Roshan, Tambo and Pace (2016), suggesting that coffee is not necessarily preventative, but some data "suggests that PD is less common in caffeine users compared to the general population".  

Amongst physical activities that prevent PD's motor symptoms from worsening are dance, specifically Dance for PD (also active in South Africa). Sotomayor et al. (2021) reviewed the impact of Music Therapy on Parkinson's Disease and if music interests you then read neurologist Oliver Sacks' book Musicophilia. The Michael J. Fox Foundation also has an opinion on music & PD. 

Some of the negative lifestyle factors, associated with a higher risk of cognitive and motor decline, are smoking and high alcohol consumption. But data from the Fox Insight online study indicates that among American football players (Bruce, et al. 2023), a "longer duration of football play...and higher level of play...were associated with higher odds of having parkinsonism or PD".

Sport & PD

I have selected rugby as a reference point for sport and PD risk, although hockey and lacrosse (13th century) predate it historically as a sport. October 2023 is also significant on the world rugby calendar.

During the early 1800s, in the Warwickshire town of Rugby, England, a rebellious scholar called William Webb Ellis, during a few football matches, caught the ball in his arms and ran with it rather than kick it. As it was difficult to hold, the football's orb-like shape apparently evolved into the carryable, pointy shape it has today. Fast-forward 200 years, and the trophy awarded to the nation winning the international men's Rugby World Cup competition is named after Ellis.       

What is useful in the context of PD and this post, is that the 2023 Rugby World Cup competition, currently being played in France, has made me aware of a complex set of on- and off-field protocols to be followed in any suspected Head Injury Assessments (HIAs). It is reasonable to assume that this is because concussions and head injuries to players increase the risk of their developing brain trauma and brain disease. This, in turn, could lead to increased risk of PD and dementia. A similar test is done for boxing injuries and is known as a standardised assessment of concussion protocol. 

Such information on a contact sport is disturbing, so, dear reader, let's focus on the positive aspects of sport and PD. Did you know that three sporting activities that are beneficial for parkinsed people are (i) no-contact boxing training, (ii) tennis and (iii) table-tennis?  

🥊 NO-CONTACT BOXING training 
This is where I, as a person with Parkinson's, would join a boxing club for the purpose of improving my "agility, coordination and balance" through the action of punching the air around me: shadowboxing! No-contact boxing training was started in the USA in 2006 by Scott Newman who found that boxing workouts helped him manage his early-onset Parkinson's Disease symptoms. (My caregiver has developed a new boxing exercise for me - she lets me punch a giant, 20cm "anti burst" body ball, while holding it firmly in front of her.) 
So, besides the possible long-term effects of boxing, as was visible in Muhammad Ali, no-contact boxing is perfect for counteracting some of the PD symptoms. Yay!  

🎾 TENNIS 
For those people with Parkinson's, and who are still relatively mobile, we need to literally be kept on our feet to avoid festination and walking on our toes, hence, tennis. According to the Brian Grant Foundation, "Tennis exercises your brain...forcing you to stay mentally alert...improves your reaction times, which could potentially cut down on freezing episodes" in people with Parkinson's. Tennis also tests and sustains "your hand-eye coordination" so it's great therapy for Parkinson's Disease. 
And in my opinion, if you are not mobile enough but have a small garden and some grass, then you should consider getting a Dunlop Swingball set. Also, have a look at the short piece on bat and ball therapy.

🏓 TABLE-TENNIS
I played table-tennis for a high school team and then enjoyed playing non-competitively till twenty years ago, so I have an opinion. Table-tennis is fun and yet it can become a complex game. According to a study by Inoue, et al. (2021), entitled Table tennis for patients with Parkinson's Disease a "table tennis exercise program is relatively safe and may improve activities of daily living and motor symptoms in patients with PD." It may also improve motor symptoms of PD.
Besides improving coordination and social skills, parts of the brain that deal with "planning and problem solving - usually impacted by the disease - are activated" as reported in "...playing ping pong could help manage Parkinson's..."

NEWSFLASH Two members of Parkinson's ZA in Durban, Naseema Parak and Rajesh Nanjee, will be participating in the ITTF World Parkinson's Table Tennis Championship to be held in Greece in November 2023. We wish them well on this trip to an exciting event! NEWSFLASH

Concluding (happy) thoughts

A sports club in Lagos, Nigeria, during July 2023, held a five-a-side walking rugby tournament to generate awareness of PD and draw attention to the challenges of living with PD: an innovative concept! Walking rugby, by definition, is a "no-running, no-contact, no-tackling sport" and it is growing in popularity in Nigeria. Also drawing attention to the plight of people with PD is a Nigerian non-governmental organisation, the Adewunmi Desalu Parkinson's Foundation (ADPF) which is sensitising citizens on caring for those with PD. Well done, Nigeria! 

Walking rugby in Nigeria is a great partner for no-contact boxing in the USA. Till next time, dear reader...

Saturday 16 September 2023

(47) PD and deafness: "nerve connection breakdowns"?

Poor decision: mask vs hearing aid!

"EARS". As an acronym it could be: to Educate, Advocate & Reduce Stress for caregivers; an Electromagnetic aircraft recovery system; or even an Endangered Animal Rescue Sanctuary. It could also refer to appendages protruding from either side of my head that, together with my brain, detect and analyse sounds. Well, dear reader, let's go with the latter meaning.

Over the past sixty years my ears have been dears but for the last eleven they have left me in tears: my left ear is about 30% functional and my right one about 60%. So, I wore hearing aids during the last five years of my working life and got used to wearing them in public. 

Between 2020 and 2022, during the Covid-19 scare, I always wore a face mask in public. However, the hearing aids and the mask both used my ears as points of attachment. Consequently, they would fight for attachment space, often resulting in the mask becoming entangled with the hearing aid. Due to this entanglement and difficulty using my hands due to Parkinson's Disease (PD), I stopped wearing my hearing aids in public in favour of the mask. But I also spent less time wearing hearing aids at home, so my already poor hearing got worse...sigh! 

By early 2023 I realised I needed an audiologist due to the following: (1) the hearing loss in my left ear had become significant and had started to affect my ability to engage socially; (2) the quality of my music listening and my ability to recognise different instruments and their sounds was deteriorating; and (3) my tinnitus had become more invasive. These three factors were a source of irritation and I needed help! 

My GP referred me to an Ear, Nose & Throat specialist, who requested an MRI scan (to exclude complications, such as a tumor) and then referred me to a reputable audiologist. The word "reputable" is being used in the context of the role of this audiologist. He did not immediately attempt to upgrade my 2017 hearing aid to a 2023 model and spent a few consultations on informed conversations and exercises to improve my ability to identify and to discriminate between a range of sounds.

I'm now a lot more confident because of the aural exercises and increased use of my hearing aids. This has improved my hearing ability, significantly. Recently, I agreed to do a talk to about fifty people at a Parkinson's ZA event. Granted, my left hand's tremors were a distraction (my presentation was recorded) and I spoke more softly than I did five years ago. However, I stood during the 10 minute talk, I spoke without notes, I believe the content was appropriate and was understood by the audience. Progress! Next, I need to work on my voice projection.   


Good decision: wear the hearing aid!

After regularly wearing my hearing aids again, I have started to wonder about my deafness and how it relates to PD. It appears that age-related hearing loss is accepted as fairly normal. Generally, hearing loss is likely to erode one's confidence, but will increase one's cognitive load and social isolation, as I think it has done to me. So, some people are ageing normally while others are not, especially those of us dealing with both PD and deafness. 

Hearing or auditory input, is a sophisticated process of sound entering the ears and then being interpreted by the brain. According to the Dr Sara Mamo (2022) presentation entitled "Hearing and Cognition in Parkinson's" at a conference of the American Parkinson Disease Association (Massachusetts Chapter), recent research indicates that "nerve connection breakdown", like that resulting from the lowered levels of dopamine, also, negatively affects the processing of sound! So both deafness and PD share a common, general weakness, a "nerve connection breakdown". Both have a negative impact on the brain's ability to process signals.  

According to Mamo (2022), generally, "there are [possible] connections between brain changes and auditory processing". Recent research (see the Mamo presentation for references) into hearing loss and PD has been examining areas where specific factors have been accelerating that decline, and some of these are:

  • Top-down inhibitory pathways - measured differences between PD participants when they were "on" vs. when "off" medication, measured via electrodes on the scalp;
  • Speech perception - related to deficits in speech production (motor processes); and
  • Auditory attention - different patterns between PD and Alzheimer's Disease.
Mamo (2022) also raised the issue of barriers to our wearing hearing aids, specifically, four factors relating to the following:
  • Cost/Affordability - in South Africa hearing aids cost between R10,000 and R80,000 a pair;
  • Access to Services - in South Africa you generally need medical aid and an audiologist - the USA is presently working on a cheaper, "over-the-counter" option to be approved by the FDA;
  • Technology Design - these vary from hearing aids (customised in-ear and over-ear), to personal sound amplification devices (generic fit with bluetooth connectability to a mobile phone) to hearing assistive technology (a simple headset amplifier that resembles a Walkman); and
  • Awareness & Understanding - three tips to improve communication with the deaf: 1. Get the person's attention; 2. Get face to face; and 3. Speak slowly.

Concluding thoughts

Dr Mamo's YouTube presentation and my audiologist in Durban have both given me (and hopefully you, dear reader) a generous helping of food for thought.

  1. If my brain is responsible for my hearing and my inner ear "damage" (in my left cochlea?) is making me deaf, then the brain has to work harder to make sense of all sound in my external environment. So, being deaf means there is a "nerve connection breakdown" that results in additional pressure on the brain's ability to process auditory input, i.e. my hearing.
  2. If my Parkinson's Disease is responsible for my generally declining levels of dopamine resulting in my slowness, limb tremors, stiffness and poor balance, then my brain has to work harder to facilitate my being seated, my rising from sitting and any motion. That implies a "nerve connection breakdown" placing additional pressure on the brain's ability to process data from my body. 
Therefore, the "breakdown" in both 1. and 2. above means that there's a sense of continual fatigue in my brain, not unlike a mental fog leading to inefficient cognitive (in my case, inefficient processing) ability! Although it makes sense, it's a sad disconnection in me.

But, there's dessert to accompany our food for thought. It's an informed piece from Jo Gambosi, a US columnist who's sister Bev's poor hearing declined even further after her PD diagnosis. It is a useful reading (with linked resources) in the context of this blog post 47. Till next time...be safe.