(39) Parkinson's advocacy: persistence & results

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

The indefatigable Fox!

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

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

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

USA and RSA

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

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

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

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

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

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

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

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

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

KZN Parkinson's support

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

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

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

   

Conclusion

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

(38) MY PD: positive reflection & activities.

😀 Smile with me: Tremor Knower 😀

Because of my tremors, the following rumours are not true:

(:-) The local SPCA is hiring me to pat their dogs; and 

(:-) a local fireworks company is hiring me to light matches quickly.

Labeling my PD

Parkinson's Disease (PD) rattles me on a daily basis. My monthly Parkinson's Disease (PD) out-poring in this blog releases part of my agitation, the completed post being the equivalent of a mild sedative. (Sigh!)  

When trying to define a PD moment or to describe my response to it or to share a strategy, it is authentic. What I'm grappling with is a broad label which will aptly describe this. Are there such labels? Does it matter if there aren't and I or you create them? Let's go down this rabbit hole, dear reader, to see if...

YIN & YANG My PD is something cold and dark inside me. In previous posts I have described my PD as experiencing a terrorist strike on my health and having my body hijacked. It's a scary space in which to be. While such thinking about my PD becomes a source of negative energy representing a cold, dark part of my life, writing this blog from a first person perspective (that is, subjectively) also allows me to view my PD from a distance (almost "objectively") and to accept my circumstances! 

In short, my Blog transforms the stark, dark, cold reality of my PD into stories that are a source of positive energy, that make me feel bright and warm when published. Maybe I'm reading too much into my writing but what I'm expressing is a set of feelings that exist as a pair of opposites, like the notion of Yin & Yang.

In the principle of Yin & Yang, where positive and negative elements always coexist (like the PD in me), the ideal is to find a balance between the dark (Yin) and the light (Yang) as an increase in the one means a decrease in the other. I have found the semblance of balance via a monthly blog, that sort of falls into the category of Yin & Yang! There certainly is a co-existence of the 'positive' and the 'negative'! So maybe this is apt...            

 

PINKY & BRAIN In Post 16 I assumed my PD struggle was represented by laboratory mice, where my PD is "the character Brain, while my resistance and fightback is represented as Pinky. The more PD (that is, a Brain) tries to convince me that I am on a downward spiral, the more I resist and present a conscious fightback so that my muscle memory (driven by a Pinky) responds appropriately." 

This appears to be another label and it resembles Yin & Yang. In addition, the Pinky (alter ego = "other I") & Brain (ego) analogy connects the "subjective", first-person perspective of me, as information source and a parkinsed person, to the "objective" nature of the the completed product, this Blog.    

I will allow you, dear reader, to decide whether Yin & Yang or Pinky & Brain is the more appropriate label to describe my PD. (While both are apt, I'm leaning toward one. If you have an opinion, then PLEASE EMAIL IT TO ME, together with the request below.) The reason I am engaging you in this process is my growing sense of frustration with my hijacked state. Walking is increasingly becoming an issue so I have to use greater amounts of will power each week to walk outside and to exercise inside. And, remember, I have been more sedentary this year! 

REQUEST: paint-by-numbers project

I'm still prone to procrastinate, something that you also may be experiencing, so let me make this request. A month ago I bought my first paint-by-numbers kit - containing numbered pots of paint with corresponding numbers on a printed picture on canvas - and it is still on my bookshelf. I'd like to complete this project before my next post. Sharing this info may energise me into doing it, so please read on! 

👀  REQUEST: PLEASE EMAIL ME this following question BY 30 NOVEMBER 2022: Ari, is your paint-by-numbers project complete? Each reader who sends me this reminder (just put the question in the Subject line of your email) will receive a copy of the completed picture by email. OK?  <ari.naidoo@gmail.com> 👀   

MY PD: November 2022

I'm frustrated and still trying to be realistic about being parkinsed. I understand that I need to deal with this new reality. 

I'm proud of my academic qualifications, namely, five degrees and a diploma. However, after I retired, these qualifications and the title of "Dr." are not part of my new context of a parkinsed husband, father and grandfather. Facilitating learning in classes of academic staff, both online and contact, is part of an expired reality that is in the past. My new reality is learning how to survive with Parkinson's and without drugs, so let me PRESS THE RESET BUTTON now and get "undepressed". 

Let me share some observations that, upon reflection, make me feel a whole lot better. Some activities have been mentioned in previous posts but let me re-remind myself and you, dear reader. I will start with the video of an exercise song (please turn up the volume) sung by Julien the lemur in the movie Madagascar. His picture is below.

Here's my list of observations involving a range of my activities in which I have 'to move it'.

PHYSICAL ACTIVITY: Walking

As described in post 37, I try to walk outside for at least 10/20 minutes three times a week. Outdoor walking with my caregiver is followed by 20 minutes of stretching indoors. When the weather is poor then I cycle indoors on my mini bike (reviewed in post 19). 

PHYSICAL ACTIVITY: Facial
It's a good idea to do face stretching exercises daily to attempt to counter the standard, expressionless "angry face" worn by those of us with PD. It helps if you are able to do these facing a mirror, preferably while seated. When you start to "feel" you are on the right track you can also do them lying down, with someone watching you if you are prone to choking. Naturally, the number of repetitions will depend on what is manageable. 

I like to start with (1) an exaggerated smile with closed mouth, cheeks pulling upwards, followed by (2) an exaggerated sad face pulling my lips and cheeks downward (not pouting), after which I will (3) puff up my cheeks by filling them with air (lips still closed) and repeating (1) and (2) with air-filled cheeks. Then (4) frown as hard as possible creasing the forehead followed by (5) un-frowning and finally (6) moving both ears backwards and (7) forwards, which can be more difficult than it app'ears'. REPEAT>>   

Then I do few tongue exercises by (8) sticking out my tongue straight ahead without curling the tip, followed by (9) stretching the tongue to the right, to the left, upwards and downwards. REPEAT>>

PHYSICAL ACTIVITY: Stretching

These are standard but the transition time of each set and the time between (1) and (2) as well as (3) and (4) will depend on how much strain is placed on various muscles and how well you cope. 

(1) Both arms are stretched in front of me in line with my shoulders ensuring I look at my hands with outstretched fingers then (2) both arms stretched above my head while tilting my head upwards to look at my hands with outstretched fingers. Then (3) both my arms (hands with outstretched fingers) on either side of my body (right/left arm to my right/left side) till they are parallel to my corresponding shoulders. Then I move my wrists so my hands move first in (4) a clockwise then (5) an anticlockwise direction.   

PHYSICAL ACTIVITY: Hands

The simplest is for me is to (1) stretch both arms out in front of me then (2) at the same time quickly close the fingers of each hand tightly after which I then (3) open both fists quickly by flicking out all fingers on each hand and flexing them simultaneously. This action must be done using as much speed and energy as possible. REPEAT>>

Another is to repeat the above (1) but (2) I slowly move the thumbs inwards so they are touching each palm, then slowly move the second fingers so they cover the uppermost part of the thumb followed by slowly doing the same with the third fingers, ring fingers and pinkies, slowly making a fist. Then slowly reverse the action by moving the pinkies outward and straightened, followed by the ring fingers, third fingers, second fingers and thumbs until both fists are open hands. This action must be done using slow, deliberate movements. REPEAT>>

PHYSICAL ACTIVITY: Feet

In a seated position I straighten the knees and (1) raise both feet out in front of me and off the floor. Then I (2) curl the toes then point and stretch them. I repeat (1) and (2) and then rotate my ankles so my feet move first in (3) a clockwise then (4) an anticlockwise direction.   

MENTAL ACTIVITY:

All my current mental online exercises have been described in post 37 and I'm still enjoying them.  

CUEING: standing & walking from a seated or stationary position

Here I remember the name of a shampoo called "Head & Shoulders" as part of my cueing phrase ("cueing" was covered in post 27). Standing from a seated position is by far the most challenging action for me to complete. Floor covering (carpets, tiles, gravel) is critical as is the kind of chair and its weight. The greater the resistance between the floor and me seated in a chair, the greater my effort and level of anxiety to complete the action of standing up. 

In order to stand from a seated position, I ensure (1) my thighs are as far forward as possible on the seat with my bum at the edge and (2) my feet are as far back under the chair as possible. Then (3) I use the sides or armrest of the chair as a support surface to move myself forward, continuously saying to myself head-over-shoulders then head-over-heels and I initiate the intention to stand. To complete this intended action, before I stand (4) I fixate on a mark/spot/line/pattern on the floor or wall in front of me. This is called "spotting" (covered in post 7 - to assist me with balance when dressing). Often, I stand and walk. 

If I'm stuck then I use the popular emergency exit recommended by occupational therapists, which is to rock forward and backward until I have enough momentum to lift myself up and then initiate "spotting".    

"Cueing" has also become valuable for unfreezing me. When in the shower there are times when my right hand (my right side is the slower side) is unable to reach under my left armpit. So I have to say to my right hand "unfreeze" and without fail, it does! Another instance is when I stand up and turn to walk. My movement is jerky and unsure. I have noticed that, once standing, if I "cue" the right foot to move first and I indicate its direction and then do the same for the left foot, I do not falter in my steps when walking.  

Conclusion

At what stage of PD am I? I can only guess that it's advanced and I'm s-l-o-w-i-n-g down. No sweat, the worst case scenario is...errr...that it's advanced, so, let's keep fighting the good fight, right? 

Oh, you owe me an email before or by the end of November. I look forward to it (even if it's not in English). Till next time, dear reader, I... 

    

(37) Dissecting PD, one assumption at a time

😟ACKNOWLEDGEMENT😟

I tend to repeat incidents and observations across my Blog posts. This is because there are overlapping contexts in which my experiences are rooted and, occasionally, they reinforce ideas. I apologise if this appears to be careless repetition. Remember, we can also chat at <ari.naidoo@gmail.com>.

Sit-t! Stay-y!

For most of my teenage life I would walk or cycle everywhere! When I was 40 years old I started power-walking, an exercise that had less impact on my joints than jogging had. I only stopped power-walking when I was 62, because of Parkinson's Disease (PD) and poor balance. And, as I have flat feet, I've been wearing corrective inner soles in my footwear since 2004. 

PD brought about physical change. My right side was affected first and because I started to drag my right foot slightly (2013-2017), colleagues thought I had gout. At work I often wore wrist weights on my right ankle and wrist, to remind me to move them during long walks on the large campus. After I retired in 2017, I lived in shorts and sandals, as it became difficult to tie shoelaces and to put on my socks. By 2020, when we moved to KwaZulu-Natal, I was sedentary (i.e. seated) most of the time. My exercising was reduced to 10-20 minute indoor sessions three times a week in front of a computer and from the comfort of a chair! 

That signalled the end of all outdoor activity, except, occasionally pushing a shopping trolley for extended periods in a large mall. Even trolley-walking wasn't ideal during the Covid pandemic (2020-2021) as I had to wear a mask which hampered breathing. In 2022 we moved to another apartment (see Post 35), so, more sitting and moping while I grew accustomed to the new space. The constants during rare walking occasions were my sandals and my walking aid.

The essence of the above is that between 2013 (PD diagnosis) and 2017 (retirement) I accepted and internalised the notion of having PD which, I think, resulted in my body becoming inactive. More and more muscles - especially those on my right side - became stiff after moving to our new road-level apartment, as there are no flights of stairs to be climbed. My body started to slow down because I believed I was slowing down, with muscle memory probably responsible for most muscle "damage". With hindsight, retirement created the perfect environment for PD to take root. 

Theory & rationale: avoiding PD drugs

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. 

During recent visits to two neurologists (Ni and Nii) and a physician (Pi) the following is their take on my condition (details of Nii are in Post 23).  

• Ni (2020): "we can make a difference in your life with weekly, photobiomodulation via low-level infrared, laser treatment". I tried it because the neurologist was not judgemental, the procedure was non-invasive and I was PD-drug-free = I believe it made a huge difference to my brain and my body, even if there was a placebo effect determining my belief.  
• Pi (2021): "no drugs for 10 years - you have had amazing gains in your life! But Ni offers untested treatment (and he sniggered) - also, there's no clinical trial to support this." Then he recommended a mainstream neurologist, Nii = I accepted the recommendation. 
• Nii (2021): after a thorough examination he asked what medication I was taking, and his response to my answer was: "No drugs for 10 years - but, WHY? And you tried Ni (he also sniggered)? Here's a script for the gold standard in dopamine replacement. We will start with it twice daily then increase it to thrice daily, later" = I did not use the script and cancelled my follow-up appointment.  

I believe that we are able to control much of what the mind tells the body to do if it is done methodically and purposefully. For instance, 20 minutes of daily transcendental meditation lowers your heart rate when done correctly (I can vouch for this). Also, there is the notion of the body being able to renew itself, for instance, see Brandon Bays' The Journey and Joe Dispenza's You are the Placebo. There appears to be something built into our bodies that will regenerate it if we care to seek it out and harness it. I have also written about neuroplasticity (see Post 28) in a similar context.         

A kick-start?

After 10 years of being PD-drug-free, I have dodgy balance, I look angry and I take a long time to eat, to shower, to dress and to walk. I'm also self-conscious when in public spaces or meeting people for the first time so I tend to tremor excessively for a while. However, I'm convinced that my 70 year old brain is less "fuzzy" and working more effectively since 2020.

Regarding academic work, my last journal article was published in 2013, my last conference paper was presented in 2015 and then publically accessible writing ceased until my first Blog post in April 2020. My old confident self returned and I have been able to focus on my composition and writing ability. I have isolated five factors that may have kick-started this confidence and, possibly, slowed-down my PD.

Let me unpack these five factors for you, dear viewder (viewer+reader).

1. Photobiomodulation A concerned relative sent me a link to a January 2020 Carte Blanche programme featuring low-level infrared light treatment for PD, and the clinic offering Bioflex Laser Therapy was in Durban! I was intrigued as I watched it. Soon after, during the height of our COVID level 5 shutdown, I started my laser therapy. I opted to continue with the weekly, hour-long treatments for just over a year. I believe it triggered a series of positive reactions in me, something I am unable to prove, bar my personal testimony of it as a positive, lasting experience. My headspace was rejuvenated.

2. Ayurvedic treatment for PD I had been thinking about this approach for a few years so I consulted a doctor who has a practice close to where I live. The downside is that I am unable to recover my medicine expenses through medical aid but the upside is that doctor TRG is familiar with PD and has Ayurvedic medicines. After a three-month detox in 2021, in January 2022 he prescribed three medicines, one of which contains nature's equivalent of levodopa. I've had to give up my daily coffee, my favourite single malts and most meats but it is worth it. Complementing the medication is meditation and breathing exercises. There seem to be improvements in my response times to physical actions.

3. Mental Games (a) Word Challenge and (b) Wordle (New York Times version) challenge my ability to guess five-letter words through a process of elimination - there are only six chances to guess the right word. Both games provide scores and track progress but Wordle has sophisticated tracking and scoring systems. (c) Solitaire is based on the classic card game where one sorts and organises cards according to sequential numbering and card type. (d) Lumosity is a set of computer-based games testing problem-solving, memory, visual perception, language, logic and maths designed by neurologists. Some games are scored according to mouse-response speed (a challenge for my left hand) but most are not. There is a free as well as a premium version. I believe all 4 games have made a contribution to my mental agility.

4. Caregiver LM arrived in July 2022. She's confident about her job and provides care and assistance for me during the week. Besides tidying my space and attending to at least two meals she conducts and supports my exercise routines. I've been walking in sandals, for 15 minutes around the apartment block, at least thrice a week since she arrived. I'm also walking up and down stairs as a warm-up before my short walks. Also, from August I've been walking without my walking aid, which is good for my confidence! And on 27 September she put on my socks and walking shoes, and I went for a 20-minute walk around the block. What a thrill to walk in footwear with appropriate support! I kept the shoes on the whole day 😀. 

TIP FOR ME I've discovered that my balance improves during my walk, if I'm gently holding small stress balls in each hand. They allow my shoulders to relax and encourage me to focus on the act of walking!   

5. PD support For nearly three years I've relied on the brilliant online support of MDS based in Gauteng. However, I miss the face-to-face, warm-bodies' support. A few weeks ago, Parkinson's ZA was launched in Durban. To date they have run four, weekly two-hour long Occupational Therapy workshops that have been most useful. There have been illustrated handouts to support each weeks' activities, from dressing, to entering or alighting from a vehicle, to handwriting: all practical and applicable. Each session starts and ends with appropriate exercise. Naturally, LM accompanies me to these workshops.     

I hope this post has kept you curious, interested and perhaps informed, dear "viewder". Till next time, stay safe. <ari.naidoo@gmail.com> 

(36) My Parkinson's positives: 2013-2022

Words, words, words...

In 1958 I went to the The Good Shepherd, an English-medium primary school in the Eastern Cape. The mother-tongue of the children was either English, Afrikaans or Gujarati and I also learnt to read and write in Tamil at home (I cannot, anymore). Then, I attended an Afrikaans-medium high school. At university I majored in English and Drama (including courses in Afrikaans and German). I completed an Honours in Drama as well as a Master's degree on Adam Small, a South African playwright who wrote mainly in Afrikaans. 

My first teaching post was at the University of Zululand (1980), where I was sensitised to isiZulu and how different it was to English. Most important was the impact of one's mother-tongue, such as isiZulu, on one writing in an acquired language, such as English.

As I had been exposed to a number of languages in my life, I became critical about the impact of English on speakers of other languages, so I focused on language and writing in my career and research. Between 1988-2001, I explored ways of facilitating the English writing process for undergraduate students, whose mother-tongue was not English. From 2001, my focus shifted to assisting academic staff with their writing, leading to a PhD in 2007.

Literacy skills - particularly reading and writing - have always fascinated me, which is why I am grateful that, after having Parkinson's for ten years, I am still able to think, compose and type. Today, we will zoom in on my "handedness".

Incidentally, the Tamil script equivalent of my full name, "Arungasen", is "அருங்கச்சென்" (courtesy of a website). It looks vaguely familiar, dear reader, but I am unable to verify this, so...

Optimism: what's left to go, right? 

From the time I was diagnosed with Parkinson's Disease (PD) in 2013, I opted to stay Parkinson's-drug-free. At the time, I read extensively on the subject and was concerned with the possible and unpredictable side-effects of PD drugs. 

As PD appears to facilitate one's stress and anxiety, I have been consciously trying to focus on purely feel-good moments while also celebrating the gains in my PD life. Some positives (+) are below.

+ Positive News site. In keeping with this thinking, I subscribe to the Good Things Guy, a South African good news site. I get a weekly email with links to South African news to warm my heart. 

+ This Blog. Another positive is my typing, specifically related to learning to type with my left hand (a function that includes five left fingers and at least one finger from my right hand). This skill has developed over the last four years, and is worth noting, considering that I was born with a dominant right hand (see Neuroplasticity in post 28). The most productive thing I have done since retiring is to have produced this blog that has attracted people to visit the site regularly. Two general observations follow.

1. Numbers. During the past 28 months, since the launch in May 2020, there has been a total of 1701 views of my Blog (these are views as I have to assume they have read either part or all of my posts). Each of the 35 posts' viewership has varied between 20 and 60. 
2. Location. Most of my viewers are local and the rest are overseas. During August 2022, for instance, out of a total of 49 viewers, about 37% (18) are overseas [Russia (14), Ireland (2) and Greece (2)] while about 63% (31) are in South Africa.      

+ Handwriting. This is something I have valued as one who used to love to write and collect pens and pencils. Neurologists observe handwriting to determine whether one has a movement disorder such as PD. A simple test consists of writing a sentence, e.g. a nursery rhyme, and drawing an Archimedes spiral. Another is a comparison of writing or letters of the alphabet on lines and without lines. These tests are done in the context of Parkinson's tremors, stiff fingers and involuntary quivers.  Below are a few examples produced at home, seated at my desk, relaxed.  

1.  The paper is only 7.5cm square and I used a ballpoint pen for the writing and the Archimedes spiral. Enlarged, the writing appears to have been done with a shaky hand. 

OBSERVATION: I struggle to fill out forms in public, unless I'm able to control the lighting and surface on which I can write as clipboards are terrible! At home I am relaxed, while I am anxious in public. For instance, this week I attended a Parkinson's ZA occupational therapy workshop in Durban. My caregiver had to fill out the one-page registration form for me as I was unable to do this on a clipboard. (Sigh!)  

 
  

2. I wrote this last month using a Yoken felt-tipped calligraphy pen. I used to enjoy calligraphy but do not appear to have the patience for it anymore. I used a ruler to draw the lines, each one 4cm wide, on which I wrote. The paper is a normal A4 size sheet 21cm X 30cm. 

OBSERVATION: I surprised myself when I produced this, one line a day over five days. I was curious about my ability to write neatly and now it has been satisfied! Again, it was done at my desk and I was relaxed.    

 

+ Hand "dominance". There is a documented notion of mixed-handedness or "cross-dominance" which may describe what is going on with me (see Posts 8 and 28) regarding my left-right hand use. However, this describes a negative attribute when it occurs in children. These labels describe one favouring either the left or right hand, often in sport, leading to a "slowing" down of the brain function. Consequently, such labels often have a negative connotation when associated with children whose brains are still forming. 

In my case, a 70 year old adult, the following are estimations of my present state of handedness, where "LH" refers to my left hand, "RH" refers to my right and "pre-PD" refers to my condition before diagnosis in 2013. Below, is my list of the not-so-magnificent seven acts, monitored over the past seven years! I have listed these seven acts as they are based on my long-term observations.

• HANDWRITING.............:  RH (exclusively).................(pre-PD: same) 
• BRUSHING TEETH........:  LH (80%) + RH (20%).......(pre-PD: reversed)
• BRUSHING HAIR...........:  LH (80%) + RH (20%).......(pre-PD: reversed)
• SOAPING MYSELF........:  LH (80%) + RH (20%).......(pre-PD: 50%/50%)
• DISHWASHING..............:  LH (mostly).......................(pre-PD: reversed)
• TYPING (KEYBOARD)..: LH (80%) + RH (20%)........(pre-PD: reversed)
• MOUSE (COMPUTER)..:  LH (exclusively)..................(pre-PD: reversed)

The handwriting and ability to write has remained a constant, probably because of the complex processes connected to the act of writing. The handedness of the other six acts has been changed by my PD: what I like to call my "hijacked dexterity" 😒.  

   

Without PD chronic meds, what's left?

Well, if "chronic" means something that is persistent and generates effects that are long-lasting, then PD fits the bill. Being parkinsed also means that most PD people should take chronic medication for a long period. That also means that PD people taking chronic medication have to endure the possible side effects of such medication. NB: I respect and admire the courage of all my PD acquaintances who are on chronic medication!!!   

It is well documented that the most commonly prescribed drug for Parkinson's Disease is L-dopa/ Levodopa/Carbidopa/Sinemet/etc. This drug encourages the brain cells to convert its ingredients into dopamine, which, as we know, is in short supply due to the presence of Parkinson's. The result of such a conversion is that our dopamine supply is restocked so that we return to some form of normality. 

 In the world of nature's alternatives to drugs, there is a tropical bean, called mucuna pruriens. I've mentioned this before in posts 24 and 35. These beans contain natural levodopa that, unfortunately, is poisonous if ingested in its pure form. However, it has been extracted and used in ancient Chinese and Indian medicine for many centuries, including Ayurvedic regimes. For the curious reader, there are two research papers that look into this (Paper 1 & Paper 2). 

That's all for now, dear "viewder" 😁.  Till next time, take care.

(35) PD equation: routine + confidence = in/dependence

💬 NEWSFLASH: PD and the USA 💬

Support, care, treatment, research, etc. into Parkinson's Disease (PD) cost the USA $52 billion annually. So, instead of continued budget increases (projected estimate for 2037 is $80 billion) the Michael J. Fox Foundation for Parkinson's Research has introduced into the US government's House of Representatives, via both a Republican and a Democrat representative, "legislation solely devoted to ending Parkinson's Disease" in the USA. A wonderful, First World idea! 

Click on the link above to read more. 

  

Settlement cracks

Settlement cracks are the tiny, narrow cracks that sometimes develop in newly built walls. They are a natural result of a heavy structure settling and generally harmless. Like these tiny cracks, I experienced varying levels of "settlement" discomfort, my "cracks" manifesting as increased tension, irritability and mild depression during the first six months in 2022. An obvious reason was my adjusting to the sale of our old third-floor apartment - access via four flights of stairs - and subsequent move to a new road-level apartment in another wing of the same block. 

The close-up picture below is of moss growing in cracks on an exterior wall of a Western Cape house. In my opinion, this is a fascinating shape resulting from within something that is supposedly imperfect. Nature is adding visual value!

 

My own "settlement cracks" appeared this year as a result of my instability because we decided to move out of our apartment. First, there was advertising then negotiating the sale of our old apartment (January/ February/March) followed by packing and preparing to leave (March/ April). During this time we negotiated the purchase of the road-level apartment (March/April). Finally, after weeks of renovation we moved into that new space (May/June). 

During these first six months in 2022 I had gone from being mildly inactive to being almost completely sedentary. (This was disturbing for me, dear reader, but probably a joyous time for my PD that appears to thrive on inactivity and my co-morbidities!) The COVID pandemic also left me generally inactive during 2020/2021 when my sole outdoor activities were weekly walks down/up four flights of stairs or a shopping trolley-assisted walk through a mall.   

So, our relocation during June/July 2022 became another difficult period of adjustment for me, parkinsed and inactive. Although I was now at road level I had no motivation to walk outside on a relatively flat, tarred surface. And then in July this year, my wife suggested we hire a caregiver to assist me. I was not impressed with the suggestion but, reluctantly, I agreed to it.  

When is a foundation good?

What follows, dear reader, are recent thoughts and revelations. If a foundation is good when the building it carries is without structural faults, then what about one's lifestyle and its foundation: when is that good? Possibly when it contains elements of balance resulting in some form of harmony in one's life. 

Since I retired at the end of 2017, I moped around our home in Pretoria with no established routine to counter my PD. I joined a biokinetics class in 2018 that proved to be too expensive to sustain as was a weekly golf-training programme. I really enjoyed a weekly Dance for PD class in 2019 and that became my only physical exercise. But, I was still driving a car, still going shopping and still meeting friends on a weekly basis. For a few months in 2022 in Durban, I did weekly, computer-based Chair Yoga, Tai Chi for beginners and seated Dance for PD. However, they were isolated events done irregularly. 

In January 2022, when we started the process to move to the new road-level apartment, my attitude was negative, as my focus was on personal survival. All the above computer-assisted activities around my desk ceased, as things were packed away. 

I gradually arrived at the painful conclusion that I had become vain! Because I had spent ten years reading about and increasing my understanding of PD, my ego believed I knew everything about it. Sleeping, eating, exercising and resting appeared to be trivial elements of my daily survival compared to my broad, expert understanding of PD. My life was based purely on the need to counter the effects of my PD. What I should have done was to have integrated my new Ayurveda lifestyle - it started in October 2021 - into the ever-present PD and recreated some form of "harmonious" balance. But, maybe I needed a catalyst of some sort, to nudge me towards making a change and embracing it. 

I realise now that a foundation should be integrated into the structure that it has been designed to support. For the eleven years that I lived with my PD, I regarded PD as a destructive force. However, there was an element of "respect" and I believed I could co-exist with it. That is probably why I avoided feeding my PD with chronic drugs and opted for natural remedies and strategies. This is in keeping with my Ayurvedic regime of plant-based medication (e.g. mucuna pruriens can increase dopamine levels), daily meditation and breathing routines that, together, try to refocus me and my new life. 

My revelation is that I should have sought a balance and integrated these two elements a long time ago rather rather than attempting to divide them into two opposing forces. This is my new foundation and those "settlement cracks" are being fixed.    

Settlement cracks & other inconsistencies

The caregiver arrived a month ago. She has a caregivers' certificate (a year's theory followed by a year's practice before completion) as well as a diploma in PR. She has also worked with another senior family member who had PD, has since passed away and whose children recommended her. She starts work at 07h45 and leaves at 14h45, Monday to Friday.

She observed me for a few days, made notes and then suggested a short walk outside followed by light stress ball exercises while seated inside. Now we have a daily routine between 08h00 and 14h00, namely, breakfast, medication, word/number games, shower, exercise and lunch. Activities outside the apartment are either walking up and down stairs and/or walking around the apartment block for 15 to 20 minutes before and occasionally after lunch. Activities while seated inside are cycling on my stationary bicycle and/or using a chest expander (on both arms and legs) especially on my weaker right side. I hope my new routine is the catalyst to lead me towards finding that balance between the Ayurveda regime and dealing with the manifestations of PD! 

Routines, regularities & responsibilities

I have observed that some people hate regular activities because daily routines can appear to be an obsessive-compulsive disorder (OCD) while daily repetition for others can be simply boring. However, in my case I needed to have a regular set of activities, including exercise, to prevent my muscles from further deterioration because of the nature of PD, especially muscle rigidity. 

What the caregiver has succeeded in doing is encouraging me to be comfortably active on a daily basis. Such regular exercising should make me more confident in my general movement. I should be active for at least 30 minutes a day but if my PD has its way it will deteriorate to 30 minutes a week :-/. 

Initially, when my wife suggested hiring a caregiver, my reluctance was based on the idea that I would become too dependent on her. I now see that I was mistaken. The caregiver's presence and her overseeing my morning routine is building my confidence so I am slowly getting back a semblance of independence. And I have the afternoon free to nap, to read, to watch TV or to do nothing. More balance!   

 

Till next time, dear reader...

(34) Facing Parkinson's late or early: Connolly and Fox

Alternative realities

From my very first post in May 2020:

 

...being parkinsed is a mind game [which] is why I have chosen Hamlet's opening lines of the fourth soliloquy in Shakespeare's Hamlet (Act 3, Scene 1) in my blog title.

"To be, or not to be: that is the question. 

Whether 'tis nobler in the mind to is suffer

The slings and arrows of outrageous fortune, 

Or to take arms against a sea of troubles,

And by opposing end them?"

Realistically, I am able "to take arms against a sea of troubles" but unable to "end them". So, my way of fighting being parkinsed is being on a drug-free regime. But, am I able to reverse its effects? I'm still not sure: depressing for those of us affected by Parkinson's Disease (PD). 

I've selected this topic - "Facing Parkinson's late or early" - because after retiring in 2017, I decided to focus on analysing my PD rather than take a post-retirement contract at the university. So, in 2018, I detached myself from forty-years of specialisation, and, I'm sometimes depressed with this reality. But, when I google myself to remind me of my family and career, then I am "grateful" this late onset of PD. 

Ok, dear reader, let's examine two performers with different periods of PD onset: some of Billy Connolly's way of life and his PD diagnosis and some of Michael J. Fox's. Connolly was diagnosed in 2013, in his early seventies, while Fox was diagnosed in 1991, in his late twenties.  

Billy Connolly's life

Billy Connolly was born in 1942 in Glasgow, Scotland and has been a stand-up comedian since the 1970s. His fame in the UK came in 1975 when British talk-show host, Michael Parkinson, interviewed young Connolly on his show, "Parkinson". During that show, Connolly told a bike joke about a man whose wife had died and had been buried in his backyard. This joke drew the UK public's attention to how far Connolly was willing to go, his peculiar brand of humour and what his audiences could expect. 

In his autobiography "Windswept & Interesting", Connolly describes his unstable and difficult childhood. He was orphaned at four when his mother abandoned him and his sister, while their father was overseas, in the army. He was abused by family, unable to conform at school, had little adult support and few role models. After leaving high school, Connolly trained as an apprentice welder at a Glasgow shipyard after which there was a stint in the army. Later in life there were many performances (here's an excerpt) as a stand-up comedian as well as playing a banjo in a two-man band called the "Humblebums".

 

This range of experiences is likely to have influenced his view of life, the content of his shows and maybe his talent as a comedian. He appeared to be constantly improvising during his shows and loving it. Like most stand-up comedians, he had the ability to start a story and the mental capacity to weave a multitude of alternative angles into that story while telling it. 

About five decades of performing in the UK, then Australasia and finally settling in the USA, has nurtured the Connolly joy. Being "windswept and interesting" has become his trademark and attracted audiences all over the world. This excess of joy in his life includes his regularly dancing in the nude. Sadly, his living on the edge was enveloped by an extended period of alcoholism which he cured during his second marriage. The following seven-minute video of tributes captures his joy of being on stage.          

Besides his success at stand-up comedy, Connolly has also starred in a few memorable movies, some of which are: Indecent Proposal (1993); The Last Samurai (2003); Gulliver's Travel (2010); Brave (2012); Quartet (2012)(my favourite); and What we did on our Holiday (2014). 

As a result of his 2013 diagnosis of PD, Connolly left the stage in 2018. In a Sky News interview he said he had stopped because he needed a fully functioning brain for comedy and PD had "made his brain work differently". The onset of PD also meant giving up his love of handwriting. 

In my opinion, one unintended consequence of a PD diagnosis late in life, can be either to force one into facing that new reality head-on or pretend to ignore it. Another consequence of such a diagnosis is to modify one's life by seeking alternative remedies. 

Sir Billy Connolly received a knighthood in 2017 and is now living in Florida, USA, celebrating his Scottish heritage as well as delving into art and painting. Naturally, he owns property in Scotland, too.  

Michael J. Fox's life 

Michael J. Fox was born in Edmonton, Canada, in 1961 and starred in a television series in 1978. The love of acting led to his leaving Canada when he was 18 to settle in Los Angeles, USA. There he was able to pursue what would become a highly successful career in movies and television. Between 1985 and 2001 he starred in more than three dozen movies and sitcoms, a few of which were voice-overs for animated characters. His most famous movie character is probably as Marty McFly in the Back the Future trilogy (1985; 1989; & 1990), and his best children's movie is probably as a mouse in Stuart Little, (1999). The picture below is of Fox as a young man in his mid-twenties, destined for stardom.

His best recent television sitcom, in my opinion, is in the role of a disabled lawyer, Louis Canning in The Good Fight (2017-2022). The role of Canning allowed Fox to be himself, working within the bounds of his PD and not suppressing his dyskinesia. He was attempting to offer a real life, first-hand view of "the asshole side of a disabled character" the lawyer, Canning, rather than as a stereotype disabled person that was "sentimental, with soft piano music playing in the background". Those of you who saw The Good Fight on television will confirm this description of Fox: a fifty-something with a prominent movement disorder (see picture below).

A short list of Fox's extraordinary early career and of his most successful movies prior to his PD diagnosis in 1999 is as follows: Back to the Future (1985); Teen Wolf (1985); The Secret of my Success (1987); Back to the Future II (1989);  Back to the Future III (1990); Doc Hollywood (1991); The Frighteners (1996); Stuart Little (animated)(1999); and Atlantis: The Lost Empire (animated)(2001). The first nine movies were made prior to his diagnosis with the last two being voice-overs for animated characters in children's movies. It is interesting to note that although Back to the Future (1985), was produced on a budget of $19 million, it made nearly $400 million and is considered to be one of the best movies of all time! And Fox was only 24 years old then and destined for fame and fortune, untill...    

Fox has also written eleven books: the first a collection of photographs; five on business; and six about himself, his most recent being a biography, "No time like the future" (2020). Here, the reader joins him on a life-changing, health journey. 

Peers and critics of actors in movies and sitcoms have acknowledged the Fox festival we have been privileged to experience by awarding Michael J. Fox the following awards: 5 Primetime Emmy (US Television) Awards; 2 Golden Globe (US Film & Television) Awards; 2 Screen Actors Guild (US Movie & Television) Awards; and 1 Grammy (US Music industry) Award.

NEWSFLASH The award that will be worth noting is the honorary Oscar award to be presented to Fox in November 2022 by the Academy of Motion Picture Arts and Sciences. He'll receive the Jean Hershold Humanitarian award in recognition for his work as an actor as well as for founding the Michael J. Fox Foundation for PD research, established in 2000, nine years after his own PD diagnosis. To date, his foundation has raised over $800 million towards PD research!

PD onset realities

Connolly's autobiography "Windswept & Interesting" traces his life through 27 chapters and nearly 400 pages. His PD (and prostate cancer that was cured) was diagnosed when he was in his early seventies, and there are brief hints of PD and its impact on his life. In the nearly 400 pages of the book, there are just eight references to his Parkinson's, each only a few lines long. The following selection of excerpts from page 360 of his autobiography are a clear indication of his view of being parkinsed:

 

"I went to see a Parkinson's specialist in New York...It was a huge shock and quite frightening...the symptoms came crashing in...I had trouble getting out of chairs...Eventually the scariness diminished...it really wasn't as bad as I had imagined...There was no pain involved...You just carry it around as another wee burden." 

Fox's 11th book, "No time like the Future" is a memoir specifically tracing that part of his life living with PD. In his book are many graphic details, raw accounts of his episodes of falling and associated traumas as a result of his being parkinsed. Below is an excerpt of my Fox book review. 

"...the reader is invited to share his roller-coaster, life-changing journey. From his PD and accompanying rehabilitation to removal of a tumour on his spine (and rehab) to a terrible fall that shatters his arm (and introduces more rehab). For me, these are the most revealing as they involve detailed accounts of the impact of PD and how one's work and home environment can become an obstacle course!" (Post 20: "PD outfoxed:...").

It is clear that, for as long as possible, Sir Billy Connolly will not allow late onset PD to take over his life. In an interview on his 80th birthday he said that he needed help to get dressed. Other than that he looked and sounded fine. 

Fox's fabulous career was cut short by his young onset PD diagnosis in 1991, announced to the public in 1999. He was driven and highly motivated, dedicating his life to helping others with PD by establishing his Foundation in 2000.

So, dear reader, alternative realities due to Parkinson's are probably influenced by the onset period, age and severity of the accompanying PD symptoms. Stay strong. Do try to be positive, even for a small part of your day. Till next time...  

(33) Parkinson's detection (part 2): ok, let's face it!

Acknowledging our presence: faces and 'phones 

Human presence used to be a key factor in communication between people before we had video conferencing then Covid and now "Zoom".

Whilst working in the Zululand region of KwaZulu-Natal (KZN) I discovered some things about the traditional isiZulu greeting. Firstly, upon seeing a person I would say "Sawubona!" which, loosely translated means "I see you". This formal greeting acknowledges one's physical presence rather than, for instance, in English, establishing the time of day, saying your name and checking on the person's health ("Good morning/evening. I'm Ari. How are you?"). 

I used to fly regularly between Gauteng and KZN and noted a few times that airways check-in staff, who are trained to engage passengers, would look at my face and ask why I was angry. My response was that I was tired. It was inappropriate to describe Parkinson's Disease (PD) or hypomimia. 

A few months ago I acquired a new mobile 'phone. It allows me to log in either by using a personal identity number or via the 'phone's camera that matches my "live" face with that stored in the device and can include fingerprint access. Such use of my unique characteristics - a few are the face, eyes, hand, fingerprints - to control access through identity is known as biometrics. Erin Smith has been researching this aspect and its impact on PD. Let's connect the dots, dear reader.

PD: some approaches to treatment  

Since James Parkinson's work in 1817 (see Post 24) many attempts were made to find a cure for PD. The actual link between dopamine and Parkinson's was only made in 1957 and a dopamine substitute in the form of L-Dopa/levodopa was first used on people with PD in 1961 but without conclusive results. In 1967, a New York neuropharmacologist called George Cotzias started experimenting with L-Dopa and PD and there was much interest in his published results. Although a link had been made between dopamine and PD, they were still searching for the appropriate dose.

In Post 32 we looked at Joy Milne's hypersomnia and her being able to detect people with PD by smelling their clothes. She was even able to detect people with PD before their diagnosis. This has led to secondary research into PD where artificial intelligence (AI) is being built into an E-Nose in an attempt to "smell" skin. Sounds fantastical but is AI that intelligent? 

AI is a fast-growing industry. Computer programs are now even able to mimic our driving style and speed and replicate it exactly on the same route. This capacity was demonstrated on a British car programme Top Car a few years ago. So what can AI do in 2022 for the people with PD that drugs can't: it might be able to detect rather than to prescribe! And, it's all about people with PD and their faces: I see you...

Early detection of PD using software

Erin Smith is in her early twenties and has been a keen researcher and entrepreneur since high school. On 24 May 2022 she was nominated as one of three finalists for the European Patent Office (EPO) award for her work on early detection of PD via facial recognition software, "FacePrint", that she has developed. The context of the award is fascinating, as indicated below in the EPO blurb on her.

"...shortly after starting high school, inquisitive young Smith watched a YouTube video of Michael J. Fox, a high-profile Parkinson's patient who showed the facial expression trait known as "mask face". She began to question whether facial expressions could be analysed to monitor changes in the brain. Smith learned to code and began working on what would later become FacePrint, an AI-powered application that records facial expressions and uses computer vision to accurately detect minute indicators of early-onset Parkinson's."

Erin Smith believes that early detection is a key factor in providing appropriate support and intervention in the life of  a person with PD. She estimates that by the time a diagnosis is done and treatment provided for those with PD, they could have already lost more than 50% of their dopamine. So, instead of telling you more about her, dear reader, do watch her in a five minute videoclip where she tells her story. Her enthusiasm is infectious. The EPO Awards ceremony will be held on 21 June 2022.   

The face of PD

Michael J. Fox was diagnosed with young-onset Parkinson's Disease in 1991. I read his last novel "No time like the Future" and reviewed it in Post 20. There is a picture of him in that post, but to support Erin Smith's theory, here are two book covers showing what sparked her interest and research. Compare faces in "Comeback" published in German in 2002 and "No time like..." published in 2020. Till next time... 

(32) Parkinson's detection by an adult, dogs & kids

Parkinson's: my view

Welcome back, dear reader. In the time since my last post in March, my "stuff" and I have been in and out of storage and comfort zones a few times and finally "we" are resettling into "our" new surroundings. 

For a PD person like myself, comfort zones are the cornerstone of my life and allow me to feel safe. Some of these zones are my bed, my chair, my eating area, my medication, the bathroom, the kitchen and the spaces around each of those areas. Unfamiliar spaces need to be re-plotted especially around unfamiliar and uneven chairs and floor surfaces. For instance, when I move a chair to be seated or when rising, I need to be vigilant. I assume this is familiar territory for most of us parkinsed people. Sigh! One month to go before we move completely into our new space.   

Parkinson's: the smell 

In Shakespeare's Romeo and Juliet, Juliet argues that Romeo's family name does not matter as she's in love with a person and not a family name, when she says "A rose by any other name would smell as sweet." Smells also can be indicative of an underlying health issue or even the presence of a disease, as Joy Milne has proved. 

"Joy Milne’s husband Les was diagnosed with Parkinson’s at the age of 45. However, it had been 12 years earlier when Joy had first noticed that something was different about him.

Joy has a rare condition called hereditary hypersomnia that gives her a heightened sense of smell. When Les was 33, she noticed that he had started to develop an odour, which she described as a subtle, musky smell."

A chance meeting in the UK in 2012 between Joy Milne and medical researcher Dr Tilo Kunath (both in the picture below) has led to research into early detection of Parkinson's Disease (PD) through smell. In the initial pilot study, Joy correctly identified the t-shirts worn by patients with PD in the patient group as well as one in the control group. The latter is fascinating because the t-shirt wearer in the control group (supposedly those without PD) was diagnosed with PD eight months later!   

Based on the Milne evidence, researchers are investigating if a portable device - an E-Nose, using artificial intelligence - could be built to detect PD. There is also progress with using skin swabs to detect PD: great work all round. 

Parkinson's: "Paws for thought"

Let's digress, dear reader. Apparently, dogs as we know them - domesticated animals - are descendants of the gray wolf, that has an incredible sense of smell. So, since 1888, bloodhounds have been trained to sniff out people like Jack the Ripper. Police, nowadays, use the incredible sense of smell that dogs have in order to detect illegal foods, plants and drugs at airports. "Cadaver" dogs have been trained to find dead bodies years after their burial underground or in shallow waters. If you think that's impressive then just read on...

According to one British researcher's blog of an in-depth study of the history of dogs, it was during the eighteenth century that "[a]nimals started to be kept by a greater number of people simply for pleasure and companionship." The UK has recently taken this a step further by considering introducing a law that makes abducting a pet a crime. And sniffer dogs have evolved. 

Bearing in mind the Joy Milne story earlier, dogs in the USA have now been trained to sniff out parkinsed people. A dog trainer, Lisa Holt and Nancy Jones (whose husband has PD) teamed up to look into training dogs to sniff out PD and a short video clip illustrates this. They are so confident of their work that they have approached the Michael J. Fox Foundation for funding. 

Parkinson's: children's views

I'd like to share the following, regarding the observations of two five-year olds looking at me. Around 2015, in Pretoria, a few years after I was diagnosed with PD, we were entertaining friends when their five year old looked at my right arm tremor. She said: "Hoekom bewe oom Ari se arm so - is oom koud?" {"Uncle Ari, why is your arm shaking - are you cold?"} Naturally, I answered "yes" indicating that I was cold. I should have engaged her more but I did not.

A few weeks ago, in Durban, another five year old said the following: "Why is your arm wiggling?" I was fascinated with her observation and, comfortable with my state, I explained that I had an illness where my muscles don't work properly anymore hence the "wiggle". Her immediate query was "Is it sore?" to which I answered "No." She smiled and said "Ok!" and continued playing. On reflection I realised that I had come to terms with my being parkinsed compared to 2015. Also, both children were just curious about the unnatural tremor and just wanted to know why. This is in contrast with the many adults who merely sneak a peek at my tremors and, maybe, wonder if what I have is contagious. Hmmm...till next time.