(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... 

(43) Parkinson's week: acknowledging the curse!

International Parkinson's Week: lending hands

A demonstration of lending a helping hand may be found in a multitude of contexts, often crossing cultural, age, gender and other boundaries. In the picture on the left, the lady in the middle might be lost, tired, ageing, or have a movement disorder such as Parkinson's Disease (PD). You, dear reader, will not be able to guess her condition unless you know her helpers and what is printed on the back of the grey sweaters: walk4parkinsons2023 (see pics of walk, 15 April).

 

The week of 10-15 April 2023 was internationally observed as world Parkinson's Week and is anchored by James Parkinson's birthday on 11th April.    

Internationally, as the threat of contracting PD - especially by the aged - is becoming greater, many countries are 'lending a hand' and have taken PD seriously. For instance, the Michael J Fox Foundation (MJFF) in the USA has, to date, raised $1,5 billion for PD research, as well as lobbying the US government to fight PD and to commit to eradicating it. In the UK there is Parkinson's UK (PUK), in Europe there's Parkinson's Europe (PE) while in India there's the Movement Disorders Society of India (MDSI). In South Africa I'm aware of two active and relatively new organisations: in Gauteng there's Movement Disorder Support (MDS) and in KwaZulu-Natal there's Parkinson's ZA (PZA).  

Another person who has 'lent a hand' is Dutch horticulturist, Dr JWS Van der Wereld, who also had PD. He developed a red tulip with a white tinge and named it the Parkinson's tulip, after Dr James Parkinson, whose essay and case studies on the shaking palsy in 1817, led to the disease being named "Parkinson's Disease" (see my Blog post 24 for a detailed account). 

While different Parkinson's organisations have opted for different colours of tulip throughout the world, the red and white one is apparently the original Van der Wereld creation.  

The picture on the right was taken by my grandaughter, Piara, during a recent visit to the Keukenhof Gardens in the Netherlands. It fits the description of a Parkinson's tulip: red, with a white tinge. 

Parkinson's ZA (PZA) advocacy

To generate awareness and to 'lend a hand' during Parkinson's week in April 2023, Parkinson's ZA (PZA) - a Durban-based organisation - which provides a range of free, multi-disciplinary lifestyle tools for those with PD, participated in a series of events. According to the founder of PZA, Rakesh Harribhai, the intention is to "build an ecosystem connecting people impacted by Parkinson's...[with] a support base of allied health practitioners and caregivers". Supporting those with PD comprises multi-disciplinary lifestyle options and providing the appropriate tools. This is the basis of PZA offering weekly speech-, physical- and occupational therapy workshops. Each two-hour workshop is free and the group of regular attendees is growing in numbers. 

The World Parkinson's Week interviews and the Durban beachfront walk were to spread the word regarding Parkinson's as well as to raise public awareness of this PZA support initiative. And it appears to have succeeded. Some of the PZA Parkinson's Week events are listed below.

• Radio Lotus (Durban) interview (Anthony Courtney & Ari Naidoo) with two PZA members (poor audio, no link offered); 
• Two-hour PZA workshop (Durban) facilitated by author John Pepper (conscious walking video and how to reverse Parkinson's); 
• Durban beachfront 3km walk (video) for Parkinson's organised by PZA;
• Rising Sun newspaper (Durban) interview (after 45 seconds of video) with PZA founder Rakesh Harribhai; 
• East Coast Radio (Durban) interview (audio) with PZA founder, Rakesh Harribhai; and
• Article on Parkinson's and misperception (link below) related by PZA member, Rajesh Nanjee.

Supplementing the multi-disciplinary PD support was the presence of John Pepper. His success at reversing his PD diagnosis and controlling his PD drugs as described in his books and videos is meant to challenge the regular PZA attendees to refocus on alternative possibilities to treating PD. His presence as an octogenarian with PD is truly inspirational. 

OBSERVATION When speaking to him, I was impressed with his clarity in demonstrating the importance between a conscious and a subconscious action. This distinction is critical in the context of PD to override subconscious actions and push them into the background in order to foreground and to gradually use conscious actions as the only option. This will then gradually create sustainable, "new" (actually, the existing) muscle memory to assist us with the impact of depleted dopamine.                     

Anecdotal evidence presented during an interview with Rajesh Nanjee (IOL article link) unearthed an ugly side of public perception. Rajesh was diagnosed with early onset of PD many years ago - when he was 34 - and saw his health and coordination gradually worsen. Recently, a Durban restaurant manager  accused Rajesh of "pretending to be disabled...to access special privileges". 

To make matters worse, in the context of the "medication window", when the effect of PD medication starts to wear off, then, physically, one's poor mobility presents the ignorant public with a distorted image. This is in contrast with and quite different to when one has just taken one's PD medication and one appears to be normal. 

   

Elsewhere in the PD world

• (ECR article) Pieter van Niekerk was diagnosed with Parkinson's when he was 44. Sadly, the severity of the disease resulted in his becoming gradually disabled so he lost his job as a fieldworker for the SA Council of Churches. As a result of PD debilitations, he needs assistance with most basic chores, such as eating, personal hygiene, brushing his teeth, etc. However, Pieter also believes that "one should never underestimate the strength of one's fighting spirit". To illustrate this belief, recently at the age of 58, Pieter completed a PhD in Theology at the University of Pretoria. Well done, and "sterkte" Dr Pieter van Niekerk! 

• Neil Diamond was diagnosed with Parkinson's in 2018. In an interview, the 80 year old singer and songwriter said he'd been in denial for a few years, refusing to accept his diagnosis, and also disappointed as he had to cancel his Australian tour! But since he started accepting his PD condition he has been more relaxed about it: "There's no cure, there's no getting away from it." On a positive note, a Broadway musical on the life of Neil Diamond, "A Beautiful Noise", opened in December 2022. Neil "surprised the audience with a singalong of Sweet Caroline on stage". He's had an amazing life! 

• Michael J. Fox, in an eight-minute CBS interview on 30 April, has a conversation about his life and his hopes. At age 29 he was diagnosed with PD and remained in denial for nearly 10 years. His Foundation has raised $1.5 billion for research into PD! While it is difficult to hear everything he says, the interviewer repeats many of his comments and that is a help. For his movie and television fans, there are many familiar snippets from Fox's past to make us smile! On a sombre note for those of us who have been parkinsed, Fox says: "You don't die from Parkinson's. You die with Parkinson's."

• Notable figures with PD - besides Pope John Paul II, Rev. Jesse Jackson, Muhammad Ali and George W. Bush - are in this illustrated list.

Conclusion

While diagnoses of the aged with Parkinson's appear to be increasing in numbers all over the world, and exposure to "toxins" is assumed to be one of the causes, it is a person who is diagnosed. A living being who has made a contribution to a community somewhere, who has or had a family somewhere, and who is stuck inside a Parkinson's-encrusted shell that becomes tougher to crack as time marches on. 

So, during Parkinson's week, 2023 - and all previous years - we are not celebrating a curse but broadcasting solidarity and support to those people with Parkinson's who are in need of it. Till next time, dear reader...  

 

(42) My PD & I: cueing and observations!

BLOG STATISTICS

☺2138 "viewders" between April 2020 & April 2023.

☺Readers' countries = 1. South Africa (majority), 2. Russia, 3. Europe, then Australia, Canada, India, USA, New Zealand and Indonesia.  

☺Top referring URL = Facebook.     

Introduction 

😁 There has been a gradual increase in the readership of this Blog as well as their countries of origin: South Africans represent the majority, Russians second, a growing number of Europeans (presently 9 countries) and others are curious. This is heartwarming and makes the exercise of conceiving, developing and writing these posts a pleasant task! Thank you all, dear readers, for your sustained interest. 

😐 My Parkinson's Disease (PD), however, is making me unhappy. It's becoming an annoying part of life, gnawing away at my body and occasionally at my brain. As you know, I first noticed my right leg quivering early in 2012 so my PD has been around for at least twelve years and it's getting stronger and more dominant. Two years ago I was advised to stop driving = I listened. Last year I was also advised to hire a caregiver = I listened. I was advised by two neurologists (2013 & 2021) to take PD medication (most recently, Sinemet), but some of the side-effects I had been reading about were disturbing, so = I did not listen. 

I did not listen as I wanted to explore. I found one alternative in the natural remedies of the Ayurvedic approach (where their medicines are extracts of herbs and spices). Late in 2021 I engaged with an Ayurveda specialist and then started my PD treatment. Also, I gradually unearthed a range of customised PD exercises online (such as Gentle Chair Yoga, 5 minute Tai Chi), weekly Parkinson's ZA occupational therapy and cycling but one issue persists, namely my poor balance and dizziness. It is likely to be the result of my PD and/or my low blood sugar and/or an ear issue (I've ruled out high blood pressure). 

Today I wish to revisit cueing and spotting in the context of my PD support system. (See cueing in posts 27, 28, 38 and spotting in posts 6, 7, 38, 27). 

Reflecting on cueing strategies

As you know, in March 2020 we moved permanently to Durban into a third-floor apartment with four flights of stairs from the ground level to our front door. Initially, the stair-climbing was doable. When PD started to slow me down in 2021, I started to struggle on these stairs. I had already been using spotting as an external cueing strategy when dressing as it assisted my poor balance (coupled with my weakening arms and legs). In the context of PD, this 'weakening' is also referred to as "passive limb movement". As my balance issue had responded positively to spotting, I wondered if sequences of phrasing -- such as saying to myself "heel-toe heel-toe" -- could assist me to walk down and up the stairs in a measured manner: it did! This was my cueing, version 1.0, and I was walking confidently on stairs.

Later, I substituted the words with numbers. So, during late 2021, my "heel-toe" cue, a concrete concept to encourage my feet to move, evolved into my saying "1-2 1-2" which was more abstract. I was impressed with this adaptation to version 2.0 and believed that my using numbers (i.e. an 'abstract' representation to activate my movement) was superior to using words (i.e. a 'concrete' representation) when on the stairs. But, my reasoning was flawed. 

Moving from concrete to abstract was a mental exercise but it was not helping my motion. During February/March 2023 I noticed that when walking outside I would freeze or slow down quite often and I had no rhythm although I was walking at road-level. Actually, I had had more "rhythm" in 2022 when I navigated four flights of stairs at the old third-floor apartment! Grrr... 

👀OBSERVATION 1: what I neglected to consider was that a shift in my hand dominance (see post 8) might have affected my feet too. I was born with right hand dominance but since PD has weakened my right side, and that dominance has shifted to the left hand for most actions except handwriting! I even type with a dominant left hand! So, my left foot might have become a functioning right foot, as it were, resulting in internal confusion when using numbers ("1-2 1-2") for cueing rather than words indicating an actual foot ("right-left" or "heel-toe"). As soon as I changed my cueing to a clearer interpretation for my mind to interpret and execute, my walking rhythm returned. Also, for short periods I began to swing both arms rather than just the left arm.    

👀OBSERVATION 2: a walk around all three wings takes fifteen minutes but if I walk continuously without a break, then there's a tendency for my legs to go into festination mode where I'd be taking quicker, shorter steps and having difficulty in stopping. It is a scary result of being parkinsed! So, my solution has been to always take short breaks in order to break the rhythm of walking, especially down slight declines or slopes. And that helps. There are useful observations in gait re-education.

My cueing procedure has adapted and in the process I think I have learnt more about the inherent challenges facing the trial-and-error process of treating PD in a drug-free approach, as discussed above.  

My PD - almost a teenager! 

My PD is now 12 years old, technically an adolescent and almost a teenager. This errant child is showing signs of rebellion and bad behaviour and I wish I could ground it!  Why? Well, it thrives on being in me but independent of me, and is a know-it-all! 

👀OBSERVATION 3: the confusion might stem from my being on drug-free treatment. So, when I'm "well", then my brain responds to the Ayurvedic regime as something normal. But, when I'm really "sick" and take drugs (e.g. for a few weeks in March 2023 I had a severe cold with excessive dry cough resulting in my GP prescribing antibiotics - hence the delay in this Post 42), then my PD symptoms tend to worsen. I'm less mobile, I tremor more and tend to be more dizzy. And like a teenager, PD will not listen to me...

I should develop a cue for my PD to take a long walk on its own and never return! Till next time, dear reader, do take care.   

(41) Parkinson's thoughts & some resources.

Lending a hand...

Whether you are asleep or resting on your bed, sitting down or standing up, writing or typing, eating or drinking, showering or in the bath or brushing your teeth: if you have early onset or advanced Parkinson's Disease (PD) then, sooner or later, you will need some assistance. This generally comes in the form of medication (drugs or drug-free), people (spouses, partners, caregivers, your GP), reading or even tools (purpose-made or adaptive). In this post, I'd like to share available resources and where some may be purchased.

Regarding resources, do look online for what's available in your own country first, before searching elsewhere. In South Africa, I have not had a problem with shopping (returns or refunds) at Takealot.com. Further afield, during the past 18 years I have never had a problem with shopping (including big ticket items over $1,000) or returns/refunds at Amazon.com. Naturally, shopping overseas from South Africa, I would also need to (i) add the currency exchange rate, (ii) shipping costs and (iii) import duties that are excluded from the listed price. 

So, a PD assistive tool listed in US dollars for the equivalent of R200 will cost nearly R500 to be delivered to my door. By the way, I discovered that same R200 tool advertised "locally" by a company called NineLife, SA, was much cheaper than Amazon's. However, upon investigation, according to customers on the Hello Peter complaint forum, this is a scam! After 18 years, dear reader, Amazon still gives me peace of mind. NB! According to Hello Peter complaints, AVOID buying from NineLife, South Africa!

Shopping online or paying for an online service generally requires a valid credit card and then you are prone to the possibility of being scammed by a range of (even "legitimate", "familiar" but) bogus service providers. So, do your homework by asking friends and family for advice and/or assistance before shopping online, dear reader! Most SA banks are vigilant regarding your financial activities outside the country, and will flag and query these.

        

PD assistance

Let's return to the notion of 'assistance'. Some of what follows has been covered in previous posts so I will give you my opinion again. 

* MEDICATION (drug/ drug-free). This is very personal. The obvious decision is to be diagnosed by one or more neurologists, who, once your life-history, physical tests and diagnoses have been completed, will prescribe a pharmacologically manufactured drug with a standard dosage. You may be also be requested to make lifestyle and dietary changes. A follow-up appointment is likely to be requested of you in order to re-examine your symptoms and dosage. You should also read up (some links are below) on drug-free approaches to fighting Parkinson's. There are possible alternatives (also see Post 21) depending on how advanced one's PD has become.     

* PEOPLE (spouse/ partner/ GP/ others with PD) It's critical to talk to people close to you about the diagnoses, in order to get a few opinions and options as they might offer more objective advice. If possible, then connect with people who have already been diagnosed with PD to find out about support systems. Remember also, too many opinions are equally confusing!

* READING (online/ hard-copy books or articles) It is critical that you have a bird's eye view of Parkinson's, preferably before starting any particular regime. It's generally easier to go online to get the bigger picture regarding causes, diagnoses, symptoms, projected stages, etc. BUT, before doing an online search, if possible consider avoiding Google and use a search engine (that does not track your search and predict your perceived interest), such as DuckDuckGo! If that's not possible, then just google it and let it work for you. An explanation follows.

(Excerpt from Post 2, April 2020) "One of the mind games I have experienced is when one does a Google search, for instance, on Parkinson's Disease (PD). It will produce millions of hits. However, in this case, most of the content will be associated exclusively with either a medical or a pharmaceutical context. This does not help the few of us who are not taking PD medication. Seldom are you invited to consider alternatives, unless you specify search terms such as "drug free", "natural remedies" or "PD exercises". If you visit the Fighting Parkinson's Drug Free site it states: "Whether you are fighting Parkinson's without medications or fighting Parkinson's with medications, everybody is welcome here!" 

In all fairness, I must acknowledge that Google will always search and then find information in response to my query. The resultant activity is a tailored response to that query, allowing Google to track and assist me in the future. This filtering system provides an enormous number of similar results rather than alternatives. Unfortunately, this can be simultaneously overwhelming and depressing."  

* SOME ALTERNATIVE/COMPLEMENTARY APPROACHES 

Do check out the following online (I have tried those marked with an asterisk*): 

• Big therapy;
• Biokinetics*; 
• Aerobics; 
• Walk for Life; 
• Swimming; 
• Dance for Parkinson's*;
• Photobiomodulation*; 
• Chinese remedies/regimes & Qigong exercise; and 
• Ayurvedic remedies/regimes*. 

TOOLS (purpose made/ adaptive) 

There are many pages of assistive "tools" for Parkinson's Disease at Amazon. Here are a few illustrations without prices: it's for you to see what's available in your area then to source what's realistic and affordable either locally or elsewhere. I hope you find some inspiration. Some could be made locally. 

For those of us with tremors or stiff joints, there's weighted cutlery as well as curved cutlery.

For those of us who tremor, there are fat pens (they work). But look around your local stationery store, too.

This auto cane assists us to get into and out of the passenger seat of a car, as long as your car has a U-shaped or square steel piece in the door frame (see pic) and not a flattened "stud" for the auto cane to slot into. 

A rubber wrist and hand strengthener. (Even simple rubber bands stretched across flexed fingers generates good exercise.)

A "keywing" to make it easier to insert and/or turn a key in a lock.

A nail clipper that is easier to use than a standard one.

A spill-proof plate.

A two-handle mug - easy to hold and spill-proof.

Do not ignore the simple therapies, such as this kind of book. Or word games and puzzles to keep the brain relaxed yet active.

Or this book, one of thousands.

I love the idea on this t-shirt! Consider other, similar wording.

A cleverly constructed device to assist with sitting down and standing up, with an accompanying video (once the site opens, look at the bottom left side of picture and click on "3 videos"). 

Concluding thoughts

There's an innovative product available in South Africa called a revolving swivel seat, to assist a PD passenger to get into and out of a car's seat. 

  

If you can afford one (in South Africa the price ranges from R300-R3,000) and depending on your health, consider investing in an electric toothbrush: it will represent one more efficient tool in your PD armory. 

Here's a Parkinson's Foundation site with thoughts and audio clips on exercise.  

I am still enjoying my Threshold sports mini bike that I use while seated on a chair. It is available locally. 

And finally, till next time dear reader, on a sound note, here's a site with fourteen musicians with PD! Stay well...

(40) PD: a Movement Disorder "interview".

NB || the content regarding a drug, Park Ensonz, is pure fiction || NB

IN "THE STUDIO"

Hello and welcome to a new year! This is Ari Naidoo in the Durban studios of Radio ZABC. We're halfway through January and I hope you are prepared for an industrious 2023.

Our studio guest today is Dee Zees, son of the well-known international nerve disorder manufacturer, Park Ensonz. Dee Zees produces customised movement disorders and supplies these to millions of customers, who range from the ordinary, like myself, to famous boxer Muhammad Ali, actors Alan Alda and Michael J. Fox, singer Neil Diamond, Rev. Jesse Jackson, comedian Billy Connolly, as well as millions of others worldwide. 

I will try to keep the interview as open-ended as my producer will allow.

THE "INTERVIEW": PART 1 

Ari: Good day, Mr Zees, and welcome to ZABC.

Dee Zees: Thanks for having me - and please call me Dee.  

Ari: Ok, Dee - welcome to South Africa! What brings you to Durban?

Dee Zees: Well, as you know, my dad - Dr Park Ensonz - and I are always looking for new business opportunities, and there appears to be some potential in your beautiful country. 

Ari: Great! Firstly, Dee, for those listeners who might not know, what does your product do and are there side-effects?

Dee Zees: Okay, in a nutshell, we manufacture a movement disorder product called "Park Ensonz" (yes, named after my dad), and we distribute it at no cost to the user. This product causes parts of the user's brain to deteriorate. Essentially, it slows down users' movements, introduces tremors and causes problems with their balance, etc. We are so confident of our product that we offer a lifetime guarantee! It can also be customised to include add-ons, such as an inability to swallow, a weakened sense of taste, impact on sleep patterns, to name a few. But, for example, when it comes to hallucinations, we do not take responsibility for side-effects resulting from a user's choice of accompanying drugs - that is to be sorted between the users and their neurologists, not us.       

Ari: That's impressive, Dee! But explain to us how you can afford to distribute Park Ensonz at "no cost to the user"?  

Dee Zees: Well, our product targets and kills specific nerve cells in a part of the brain called the substantia nigra, that's responsible for making dopamine, a chemical responsible for regulating the body's movement. Our product, Park Ensonz, attacks these dopamine-producing cells, thereby limiting its dopamine production. Then, (and this is genius) Park Ensonz has an arrangement with pharmaceutical companies to manufacture dopamine substitutes. These are sold to neurologists who, in turn, prescribe them for people who get our product, Park Ensonz, free! It's a win-win situation for us all.

Ari: Okay, but WHEN does someone decide to "get your product" Park Ensonz? That question's been bothering me, Dee, so... 

Dee Zees: Our researchers have found that there are millions of traumatised people, worldwide. Some may have had work-related traumas (for example, court cases), family traumas (especially divorces and deaths), accident related traumas (especially head injuries), or some may have been exposed regularly to chemicals at their places of work, or spent significant amounts of time in the vicinity of crop spraying on farms: all these trauma candidates are eligible for lifetime supplies of Park Ensonz! It's a golden opportunity for us. 

Ari: Hmmm...okay...it sounds logical. You said at the start of this interview that there was potential for business in South Africa. Please elaborate...

Dee Zees: Sure! There is evidence in certain parts of South Africa, of communities who believe that a movement disorder is associated with witchcraft and that such people should stay at home and not be treated. We need to convince such communities that it is not witchcraft or evil magic. We must encourage them to seek assistance from their local clinics, where we would be assisting, mostly, with the supply and sale of PD drugs. Having said that, South Africans appear to be having their fair share of traumas at work, on the roads and at home. So, maybe we can also assist with the supply and distribution of Park Ensonz.

Ari: That's a reasonable argument, Dee. Right now, though, we need to have a break, dear listener, so please click on Rob Georg's Parkinson's Awareness song and we'll be back after Rob's song. Enjoy it!

THE "INTERVIEW": PART 2 

Ari:  Welcome back to the second part of our interview. Our studio guest, today, is Dee Zees, businessman and son of movement disorder manufacturer, Park Ensonz. During the break, Dee, you mentioned research into a non-motor impact of Park Ensonz such as new, physical surroundings. Would that include getting used to a new environment when going away on holiday? I spent a week away from home in December and I'm still recovering from the experience! 

Dee Zees: Yes, exactly that! Our researchers have anecdotal evidence of many parkinsed people (I'm using your term, okay) struggling to adapt to changed or new surroundings. For instance, we are aware of the following issue: "If furniture is moved around in the home or a familiar space, then people with Parkinson's Disease (PD) may experience anxiety when adapting to a new walking path or new seating area. The same applies to experiencing the unfamiliar (for example, new chairs and floor surfaces, using the bathroom, getting in and out of the bed, etc.) in new accommodation when on vacation." Ari, do these observations above, echo what you have observed over the years?

Ari: Yes, they do! Absolutely! Have your researchers indicated why this might be happening to parkinsed people?

Dee Zees: Well, our researchers suggest the following: "One reason is that PD people may become used to deploying specific motor skills and relying on familiar visual clues to determine a set of actions, executed quite confidently when at home. That same confidence is not present when they are on holiday and out of their comfort zones. Even leaving shopping bags or suitcases on a walking path at home may be a potential source of visual frustration for a parkinsed person". I can confirm to listeners that this kind of break in confidence has also been Ari's experience.  

Ari: Thanks for that, Dee. Vacation accommodation can be a source of frustration for us PD people. 

Dee Zees: Sadly, that is the case. The impact is probably similar to having one's PD medication or dosage changed. Such a change can disrupt what one's body has become accustomed to, thereby creating havoc - I guess you've not experienced this because you're not taking any conventional PD drugs, right, Ari?   

Ari: (Hey, who's conducting this studio interview, Dee? :-) Yes, you're quite right. Since my diagnosis in 2013, I've avoided all PD drugs, opting instead for a complementary therapy. In January 2022, exactly a year ago, I started taking alternative medicine as part of an Ayurvedic regime for PD, consisting of three natural remedies, one of which contains an extract of Mucuna Pruriens, a natural source of Levodopa in a tiny dose. The regime was preceded by a three-month detox and serious lifestyle change, mainly weaning myself off stimulants and certain foods. To date (it is now January 2023) my mental capacity remains good but my physical capacity has been gradually deteriorating - for instance, my tremors often get in the way of my carrying out an action. BUT, there are no unpredictable side effects! So, I am extremely grateful. And I am also respectful of all those parkinsed people on a conventional, PD drug regime!

Dee Zees: Good going, Ari - you should be proud of yourself!  

Ari: I am! And, thanks for making the time to come in to the ZABC studios - we appreciate it. Safe travels, Dee. Next week, dear listeners, we hope to interview Albert Zheimer, the forgetologist. 

Well, everyone out there, we're almost at the end of our studio time, so I'm going to end with a second PD reflection, the Mitch Faile song, "Blame it on the Parkinson's". If you have five minutes, I do recommend that you watch the whole story unfold, as the music and the visuals are great! Till next time, this is Ari Naidoo signing off...have a great week. Bye! I'm out...