(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. 

(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...

(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.

(46) TITLE & BRIEF DESCRIPTION OF POSTS 1-46

 👀

1. 2020 Parkinson's Disease & I. (=PERSONAL)
2. Parkinson's, mind games and "I". (=PERSONAL THEORY)
3. PD experiment in a movie. (=PD EXAMPLE)
4. PD clinical trial of GDNF. (=PD EXAMPLE)
5. PD, my theory and my corrective messaging. (=PERSONAL THEORY)
6. PD, muscle memory and a new normal. (=PERSONAL THEORY)
7. Balance and PD. (=PERSONAL THEORY)
8. PD & dexterity: go left, right? (=PERSONAL THEORY)
9. Another PD bond: shaken and stirred. (=PERSONAL THEORY)
10. PD, no lights, no action. (=PERSONAL THEORY)
11. PD and PBM (photobiomodulation). (=EXPERIENCE/REVIEW)
12. SHORT PD BREAK (NO POST).
13. Photobiomodulation: reflecting on impact. (=EXPERIENCE/REVIEW)
14. PBM & PD: more questions than answers? (=EXPERIENCE/REVIEW)
15. PD-2020, Covid-19 and triggers. (=PERSONAL THEORY)
16. PeeDee and the brain: am I my own enemy? (=PD ANALOGY)
17. PeeDee and the brain (Part 2): am I my own enemy? (=PD ANALOGY)
18. Forks and food for thought. (=PERSONAL THEORY)
19. PD clause: take care of head & limbs will follow. (=PERSONAL THEORY) 
20. 2021 PD outfoxed: when the odds are stacked...(=REVIEW)
21. The right to read PD. (=PERSONAL THEORY)
22. PD: generating and removing masks. (=PERSONAL THEORY)
23. The PD pharmaceutical tightrope: a delicate balance. (=REVIEW)
24. Movement orders: so who was James Parkinson? (=HISTORY)
25. PD misdiagnosis: Robin Williams & LBD "terrorism"...(=REVIEW)
26. PD: who's the boss? (=PERSONAL THEORY)
27. PD robot: GREEN(go); RED(find AMBER)...WTF! (=PERSONAL THEORY)
28. NEUROPLASTICITY & MY PD! (=PERSONAL THEORY)
29. 2022 PD: not rooted to the spot. (=PERSONAL THEORY)
30. The Good, The Bad, The Smugly: reflections. (=PERSONAL THEORY)
31. PART 2: The Good, Bad & Smugly. (=PERSONAL THEORY)
32. Parkinson's detection by an adult, dogs and kids. (=REVIEW)
33. Parkinson's detection (part 2): ok, let's face it. (=REVIEW)
34. Facing Parkinson's late or early: Connolly and Fox. (=REVIEW)
35. PD equation: routine + confidence = in/dependence. (=PERSONAL THEORY)
36. My Parkinson's positives: 2013-2022. (=PERSONAL THEORY)
37. Dissecting PD, one assumption at a time. (=PERSONAL THEORY/REVIEW)
38. MY PD: positive reflection & activities. (=PERSONAL THEORY)
39. Parkinson's advocacy: persistence and results. (=REVIEW)
40. 2023 PD: a movement disorder "interview". (FUN ANALOGY)
41. Parkinson's thoughts and some resources. (=REVIEW)
42. My PD & I: cueing & observations. (=PERSONAL THEORY)
43. Parkinson's week: acknowledging the curse! (=REVIEW: International PD week)
44. Parkinson's: an inside job? (=REVIEW: Somatic Symptom Disorder)
45. Parkinson's Disease: you've got a friend! (=REVIEW: Placebos)
46. TITLE & BRIEF DESCRIPTION OF POSTS 1-46 

 A springbok in Namakwaland, August 2014 (like me, when my gait is frozen 😐)

(45) Parkinson's Disease: you've got a friend...

Introduction

In the last post (44) I explored the possibility of my mind being powerful enough to restructure my reality: My mind had registered the act of drinking, the taste of alcohol and then "we" had filled in the blanks. Are "we" responsible for any other "misrepresentations"? I made that observation of "misrepresentations" in the context of my Parkinson's Disease (PD) against the backdrop of Somatic Symptom Disorder (SSD). As is the case in many of my posts, dear reader, this is food for thought. 

Staying with this theme of restructuring my own reality, let's look at another powerful possibility known as the Placebo effect. 

Mind matters: placebos in general

The Latin for placebo is "placere" that means "to please". The term placebo is often associated with clinical trials of drugs where non-drug substitutes - often referred to as "sham" or "inactive" medical treatment - called placebos, are administered to some trial participants in order to gauge, scientifically, the impact of the drug being tested. However, it has also been discovered over the years that some trial participants react to the placebo in a positive manner (leaving participants healthier), thereby negatively affecting the research outcome (leaving manufacturers poorer). Hmmm...

According to the Wiley Encyclopedia of Health Psychology (September, 2020), besides validating the impact of therapy, "placebos represent an excellent model to understand different brain functions and the way mental activity may affect several physiological functions...[and there is a increasing evidence to show that] social stimuli, such as words and therapeutic rituals, may change the patient's brain, and these effects are similar to those induced by drugs." So the brain may be more powerful than some of us have imagined.  

According to a study in March 2021 led by Tor Wager at Dartmouth College, titled A detailed look at the neuroscience of placebo effects - and there are many other similar studies - "A large proportion of the benefit that a person gets from taking a real drug or receiving a treatment to alleviate pain is due to an individual's mindset, not to the drug itself...[and] placebo treatments to reduce pain, known as placebo analgesia, reduce pain-related activity in multiple areas of the brain." A placebo appears to provide more of a psychological benefit rather than a physiological effect! This becomes clearer below.

A useful introduction to placebos would be to read Dr Joe Dispenza's book "You are the Placebo: making your mind matter" (available online) that describes how it is possible for people to cure themselves of ills and injuries by engaging in meditation, visualisation and positive thinking processes. The book contains meditation and visualisation procedures, anecdotes of his own and many cases involving the impact of placebos, including a story of a Dr Henry Beecher.

Apparently, during World War II, Beecher, an American surgeon, had run out of morphine when he was about to operate on a badly wounded soldier. Without a painkiller, the soldier could have gone into shock and died. A nurse filled a syringe with a saline solution and injected the soldier with it, as if it was morphine, and the soldier survived the operation. After that, whenever the field hospital ran out of morphine, Beecher injected soldiers with a saline substitute. In 1955, Beecher authored 15 studies published by the Journal of the American Medical Association. He called for a new model of medical research that would include a placebo when conducting clinical trials. 

By the way, another journalistic investigation titled The Legend of the wartime Placebo, draws attention to the possibility of other overlapping factors omitted from the famous Beecher story. This second version is just to balance our thinking, dear reader, so do skim through the "Legend" (link above). Remember, it's food for thought...  

So, if placebos appear to provide a psychological benefit rather than a physiological effect, then it would appear that the drug or placebo's packaging, appearance of medical personnel and physical delivery environment would be critical for successful impact. These factors relate to certain ingrained beliefs and expectations of the patient, as referred to by Benedetti and Amanzio (2011), who delved into the idea of how "words and rituals" could bamboozle a patient's brain. Their research concluded that "placebo-induced...changes in a patient's brain are very similar to those induced by drugs. This new way of thinking may have profound implications both for clinical trials and for medical practice."

Based on what I've presented above, placebos can be powerful mental tools, when the "words and rituals" are appropriate. Ashar, et al. (2017) also refer to the "psychosocial context in which the placebo treatment is delivered [including] the patient’s relationships with care providers...visiting a doctor’s office or taking a pill; these influence patients’ appraisals about how a treatment will affect them, including expectations for recovery." Who would have thought that "words and rituals" and a "psychosocial context" would be important elements required to convince one's brain of the success of a medical procedure.

But how does a placebo impact those of us with Parkinson's?

Mind matters: placebos and Parkinson's

In 2013, the American Parkinson Disease Association reported on the Placebo Effect in Clinical Trials in Parkinson's Disease. It made the following observations regarding motor scores of PD patients:

"Long-lasting placebo effects have been reported in Parkinson’s disease. In some medication trials in Parkinson’s disease patients, improvement in motor scores of 20-30% in patients assigned to the placebo group has been observed for up to 6 months. Similarly, improvement and deterioration in Parkinson’s disease patients have been observed after the introduction and discontinuation, respectively, of placebo medication."

The Michigan Parkinson Foundation also released a paper titled "Placebo Effect and the treatment of Parkinson's Disease that comments on PD patients and images of improved communication between their nerve cells and dopamine leading to improved dopamine release: "There's experimental evidence that taking a placebo leads to changes in the brain, not unlike taking a dose of levodopa (the active ingredient of Sinemet). These investigations have used a research tool called positron emission tomography, which images the chemistry of the brain. Scientists at the University of British Columbia have shown that a placebo can enhance the signaling between nerve cells with dopamine, the brain chemical specifically deficient in PD."

Research by Barbagello et al. (2018) titled "The placebo effect on resting tremor in Parkinson's Disease: an electrophysiological study" focuses on the effects of apomorphine and placebo on PD patients with resting tremors. "Our study demonstrates that placebo was very effective in reducing resting tremor in about half of patients...decrease in tremor amplitude in placebo responders was similar to that induced by apomorphine. The cerebral mechanisms underlying the placebo effect on resting tremor need further investigations."

Conclusion

It appears that the use of placebos and accompanying research into its various applications in surgery as well as a drug is well documented. In this post I have drawn attention to a few interesting studies on placebos and neuroscience that drew attention to the need for psychosocial factors and rituals for placebo success. There are also a few studies on placebos and PD. Here too, it appears that researchers have given placebos the green light regarding short-term use and positive impact both generally and with those who have been parkinsed. And I've tried to source readings that are not too difficult to read.

Well, dear reader, in this forty-fifth post I trust that you've learnt something about yourself and PD. Till next time...

(44) Parkinson's: an inside job?

The context

In May this year I had a non-alcoholic drink - one that I've had a few times already - and after a few sips I began to feel a little light-headed so I stopped drinking it. Later, I reflected on the power of the mind and how I had associated the taste of a non-alcoholic beverage with alcohol and its accompanying effects. 

My sense of taste and smell have deteriorated with Parkinson's Disease (PD) yet seeing, smelling and tasting that drink had an effect. My mind had registered the act of drinking, the taste of alcohol and then "we" had filled in the blanks. Are "we" responsible for any other "misrepresentations"??? 

In October 2022 (post 37), I reflected on a theory and rationale regarding my PD. I am going to use that thought (excerpt below) to illustrate another possible "misrepresentation" regarding experience and my mind.  

Excerpt from post 37

"THEORY I acknowledge that I may have fertilised my mental and physical fields for the PD forest to flourish. By accepting that I was parkinsed, I encouraged PD - like an alien, invasive species - to invade my mind and body. By believing that I was sick, I encouraged my mind to respond to and reinforce Parkinson's symptoms. The projected symptoms became manifest in me and I became a perfect Parkinson's sufferer. (Sigh!) 

RATIONALE After a neurologist presented me with a positive diagnosis of PD in 2013, my response may appear naive: TO COMPLY with decades of medical and pharmaceutical research that recommends drugs with unpredictable side-effects (anecdotal and researched) and accept that gradual drug dosage increases will be the norm, OR TRUST MYSELF to seek out alternatives that might or might not be mainstream? I opted for the latter, the most radical alternative being cannabis oil (2015) that did not work for me." 

The thought I wish to continue exploring is: am I my own worst enemy? So, dear reader, let's briefly speculate about my mind, relevant personal experiences and the actual or the possible impact of mind power! Bear in mind this is just food for thought.

Somatic Symptom Disorder (SSD)

In the context of my above theory and rationale, let's consider the possibility of me encouraging "my mind to respond to and reinforce Parkinson's symptoms...and I became a perfect Parkinson's sufferer" (post 37). THOUGHT: Had I planted the seed of suggestion that I actually have PD, resulting in actual physical manifestations, such as the slowed movements, physical pain and dizziness? My response below is drawn from research that I have come across only recently. 

RESPONSE: Now consider the possibility of the presence of Somatic Symptom Disorder (SSD) where people have a "significant focus on physical symptoms...and believe they are sick (that is, not faking the illness)." Is it possible that the academic part of my brain conjured up and reinforced the symptoms of PD (slowed movements, physical pain, dizziness) because of my reading widely since diagnosis in 2013 and then thinking too deeply about the presence of PD which resulted in my experiencing it as a reality? Also, because I had decided to remain drug-free and to fight PD using alternative approaches, did my possible vulnerability make me excessively concerned about physical symptoms and encourage the PD to take root? I wonder...

According Polo-Morales et al. (2021) my speculation is realistic as we should accept that other mental illnesses, such as somatization, can have a negative impact on disability in people with PD. Somatization is defined by them as a "subjective experience related to bodily dysfunctions, leading to communicate and experience somatic symptoms in response to their psychological distress." (Polo-Morales, 2021). It is especially evident when people with PD tend to experience and then begin to communicate their so-called 'psychological distress' that start as apparent, imagined issues but actually manifest as being real and physical symptoms. This leads to the person with PD and somatization then to seek medical assistance. 

In a Swedish survey of 20,140 patients with PD, Onofrj, et al. (2012) discovered that if they had been previously hospitalised for specific issues such as mood disorders, schizophrenia, depression as well as neuroticism, then the risk of such persons developing PD was significantly increased. Hallucinations are also an issue. (Ok, so I have not been hospitalised for any of these conditions.) 

The study by Marco Onofrj, et al. (2012) also "suggests that the relation of mental disorders with parkinsonism is more complex than commonly believed. Psychosis in PD is studied far less often than depression, apathy or impulse control disorder. In many studies, psychosis is used as a synonym for hallucinations, with the latter being considered a core element of dementia with Lewy bodies (DLB) and, less consistently, PD with dementia." In addition, the presence of somatization in persons with PD appears to be related to the level of severeness as well as "the number of nonmotor symptoms, in particular with sleep, mood, and gastrointestinal disorders" Polo-Morales, et al. (2021).

The emphasis in the cited research above is specifically on PD, non-motor symptoms and what has been observed during clinical trials. I would imagine that SSD is probably not easy to diagnose. As we have briefly examined some issues related to SSD, I wish to acknowledge its complex nature by illustrating, briefly, three related disorders:

• Illness anxiety disorder - also used to be known as "hypochondriasis", when one is excessively preoccupied with having or contracting an illness resulting in constantly checking one's health - however, with this disorder (compared to SSD), one does not experience any symptoms;
• Conversion disorder - when one's perception (= blindness), movement (= trouble walking) or sensation (= numbness) is affected without any apparent physical cause - there could be accompanying depression; and 
• Factitious disorder - when one is not sick but fakes an imagined physical or mental illness by mimicking someone else's symptoms from which they may or may not derive any benefit.    

All the above information regarding SSD and the three related disorders also draws attention to the following two issues that point to how elusive a mental disorder diagnosis can be. 

1. The illustration of mental disorders and their complexity in the 1989 movie "Awakenings" that I reviewed in post 3 ("PD experiment in a movie"), where an unconventional doctor played by Robin Williams, in the face of uncertainty, prescribes the Parkinson's drug L-Dopa for certain patients. Little was known regarding the impact of the drug and its side-effects then and it appears little is known now, more than 30 years later. 
2. The inability of neurologists in 2016 to correctly diagnose mental diseases and disorders due to their complex nature, is a serious issue. Robin Williams' misdiagnosis as a person with Parkinson's when, in reality, he had Lewy Body dementia (see post 25) is an example of how complex his issue was, even in the USA. Bear in mind that the second diagnosis was only made during the post mortem!       

There is a positive side to mind power and that exists in the impact of the placebo effect. But more about that another time.

Concluding thoughts 

I first noticed a tremor in 2012 and was subsequently diagnosed with PD a year later. Upon hearing the diagnosis in 2013, I told the Pretoria neurologist that I would weigh my options before going on the PD prescription drug journey. I was wary of this 'journey' because of the variety of side effects that had been reported by patients. While these represented anecdotal and not clinical evidence, they were aligned to my firm belief in personal experience as an example of one's own theories. (My own PhD research was grounded in personal theories of the writing process developed over ten years.)

I am now over 71 years old and being parkinsed for eleven years and Parkinson's drug-free, has taken its toll. I am starting to struggle. To have PD is a struggle, for me, on three levels: 

• I struggle with dizziness (maintaining my balance when standing or moving) and I am preoccupied with this most of my waking moments;
• I struggle with tiredness (physical and mental fatigue) that sometimes wears me down; and 
• I struggle with low levels of pain (neck, shoulders and knees) mostly on the days when I have not exercised enough. 

Amidst my struggle, I am grateful to have relatively good health, a caring wife, daughter and grandchildren, an understanding caregiver and to be able to live in a good environment. Till next time, dear reader...