(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.     

(31) Part 2: The Good, Bad & Smugly

NB NB NB NB

I'll be moving house end-March 2022.  As I'm unsure how long it will take to resettle, Post 32 might be later than usual, dear reader.  <ari.naidoo@gmail.com>

PD update: more Smugly + resources 

As a Parkinson's Disease (PD) person I believe I must review my daily activities and then assess their positive impact on me: this is The Good. I also monitor the absence of such activities and their effect on me and my PD both physically and mentally. This is similar to my regular observation of any change in effect of my chronic medication: this is sometimes The Bad. 

 

In Post 30, feeling Smugly focuses on: PHYSICAL EXERCISE; HYDRATION; MENTAL EXERCISE; and COMMUNICATION. I will share new experiences with you, dear reader, based on my review.

Some new Smugly*

(*My achievements are more than "Good" because living with PD allows me to be "Smug" about them.)

1. PHYSICAL EXERCISE: I am still shuffling around but there is less dragging of my right foot and the glue is still on on my seats, as mentioned in Post 30. The Gentle Chair Yoga (link is in Post 30) is great regarding a "return on investment" of my time and energy. I am doing this form of yoga regularly and have noticed growth in my confidence and ability to complete each phase. 

💡 Indirectly linked to my lack of exercise has been my growing inability to cut my toenails, a source of embarrassment! My weakening right side is not making this task any easier. One solution was to treat myself and to get this job done by someone else who will also cut my toenails properly. So, I have been having a fortnightly pedicure and neck and shoulder massage which is two hours of pampering. The masseuse has another PD patient, so she is sensitised to my challenges, such as bed height and my poor balance. I am unable to lie down on my tummy on the narrow massage table, so the massage is done with me seated and leaning on the table with my upper body. The adaptation works well and I'm comfortable.

💡 Standing and shifting my balance from one foot to another is a difficult task for me especially when attempting to execute a 45 degree turn either to the right or the left. I generally picture a pizza with slices and gauge my foot turns in line with my foot moving in line with the angle of each slice (thanks MarnaB, Dance for Parkinson's, Pretoria). In this context, I can also identify with the My Parkinson's Team's   Over the River exercise to help with leg movement. NB Once you've clicked on the link you will open a page with text and three short videos below each other: the first video is an Introduction; scroll down to the second, a warm-up exercise; and then scroll down to the third, the actual Over the River sequence, which is really effective for me. Do try it (I especially like their use of a tissue box).

2. HYDRATION: this is something I am taking seriously, since my prostate reduction surgery. Nowadays, I opt for a glass of water with and in between meals. Besides the natural effects of ageing, dehydration is more likely to become an issue with those of us taking chronic medications daily. One can also miss the obvious, myself included, so fruit and vegetables with high water content should be included.

3. MENTAL EXERCISE: healthy body and healthy mind. In 2010 I noted that my short-term memory had started to be less effective and I was becoming more forgetful. I looked for online mental puzzles and crosswords but they were time consuming and inappropriate when at work. Then I came across Lumosity.

💡 Lumosity is an online brain training programme that requires me to challenge my brain for 15 minutes daily. All the exercises are presented as a variety of games requiring responses via a computer's mouse and keyboard. Some of the areas of focus are spatial orientation, working memory, vocabulary, numeracy and logical deductions. I can attest to the efficacy of Lumosity during the years when I was a regular user and subscriber: to this day I am less forgetful! One can register and play a limited number of games, daily, that are free or pay and get full access. I paid for a three year period (2014-2016) and was very happy with my progress and growing ability and a lot of those abilities remain. 

Recently, I remembered this happy experience and decided to access the free option of Lumosity. Six years later, the programme acknowledged my being a subscriber and where relevant, posts my highest scores and dates in the older games. I was, and still am impressed. There are two personal lessons for me here: (i) the pleasant experience of positive achievements and good scores played an important role in boosting my confidence; and (ii) the underlying impact of spatial orientation, my working memory, vocabulary, etc. are a good substitute for the lack of daily, work-related activities as a retiree with PD. 

My biggest challenge is that presently I have to use my left hand (NB I was born right-handed) to manipulate the mouse and the keyboard. This impacts negatively on all the games especially those with time trials. Otherwise, it is a positive experience with daily challenges to improve and to learn.       

COMMUNICATION: I try to stay in touch with family (mostly in Durban), friends and acquaintances (in the country and abroad) because their presence is present. What a gift. Recently I started communicating with a long-time PD patient in Durban who, against all odds, still rides a bicycle. We have yet to meet. 

Smile!

You may have gathered by now, dear reader, that I love photography. So, today's picture share is from a bucket list road trip to Sanparks' Namakwa National Park to see the "daisies" at Skilpad Rest Camp. We drove 4,500km (Pretoria-Upington-Springbok-Port Nolloth-Garies-Sutherland-Kimberly-Pretoria) to experience the August blooms. I believe the picture says it all. And it gives me much pleasure (more Smugly).

In the picture above, the springbok appears to be at home among the orange blooms. In this blog, I appear to be at home with PD. But, both the springbok and I have adapted to new circumstances and are making the best of it. Till next time, dear reader.

(30) The Good, The Bad, The Smugly: reflections

PD: The Bad

In my last post (29) I emphasised the importance of MOVEment for those of us who are parkinsed and I will do it again at the end of this post. When we're inactive for extended periods then our joints become stiffer, we lose the confidence to move and, after what is often unnecessary rest, we are in the grip of inaction. Well, that's certainly what happens to me! This thought (inaction: when an action is expected but doesn't happen) got me thinking about recent events. In post 30, I will unpack specific occurrences: firstly, after my Covid vaccinations and secondly, when I've had alcohol. 

COVID VACCINATIONS: the first occurrence of my Parkinson's Disease (PD) worsening was immediately after my first Covid vaccination. Besides having a sore arm and slight headache, I observed later that the vaccinations appeared to have protected me from severe Covid, which was good.

However, my PD symptoms also appeared to worsen, which was bad. For about a week after the vaccinations my tremors were severe. I was unable to exert partial control over the tremors as I am generally able to do.

Also, my right leg was more immobile than usual as I was dragging my right foot (NB: my PD started on the right side) when walking and I appeared to be freezing more regularly when attempting to rise from a seated position. I would literally be glued to my seat. Naturally, this generated much anxiety, resulting in more frequent freezing of such movements. I started to believe I was in a downward PD spiral and maybe my ten-year drug-free regime had been a huge mistake. 

After subsequent Covid vaccinations I observed the same results: increased tremors and temporary freezing of my right side. The Covid vaccines appeared to have triggered something that affects my conscious control over some of my PD. 

ALCOHOL: I have observed that whenever I had my favourite tipple my legs and arms would start to freeze while I was seated. The impact was the same as having a Covid vaccination: glue and seat! To ensure that I did not go to bed in this state I used to drink alcohol late in the afternoon rather than at night. My current Ayurvedic regime has made me more cautious about alcohol. I have also cut back on another favourite, my daily coffee, now opting for it weekly.

PD FALLS: in tennis, "unforced errors" are when players lose points as a result of their own, personal pressure resulting in their making errors when there's indirect opponent pressure. So, I will adapt that for PD. If I have fallen as a result of my foot being caught on a table leg then it is a "forced fall" and my fault. However, if I fall as a result of my PD causing me to be off-balance, then it is an "unforced fall" and not my fault. Whilst being parkinsed I have had an equal number of both "forced" and "unforced" falls. My last was an "unforced fall" a few weeks ago - that resulted in a sore shoulder, sore bum and a severely bruised ego - and the previous fall was 18 months before that, so 👍...

PD: The Good

After years of ignoring suggestions that I consider yoga - mainly because I am stiff, overweight and unfit - I have listened to my Ayurveda doctor who has recommended two yoga breathing exercises. In addition, my brother has recommended chair yoga. I do this chair yoga on alternate days and the two yoga breathing exercises twice daily and Dance for PD in between. The chair yoga is ideal for PD people so I am envious of the Kruger National Park giraffes below because as browsers they are able to move their necks, knees and spine in a way I cannot.

 

👌  CHAIR YOGA, specifically Gentle chair yoga has been a revelation. The 25 minute session of a range of muscle stretching and controlled breathing is becoming a powerful part of my tool box of confidence. I believe that although I am only 60% successful at completing each action, immediately after completing a chair yoga session I have had consistently greater success and confidence with the following: walking; putting on my sandals; rising from a seated to a standing position; or turning onto my side in bed. When I am unable to execute any of these four actions, what follows is freezing, tremors and unnecessary anxiety. And freezing, tremors and anxiety should be experienced as little as possible when one has PD. 

👌  YOGA BREATHING EXERCISE: the alternate nostril breathing technique is useful - if you are curious, then the short video link provides a brief introduction. Alternate nostril breathing can lower stress and improve your lung capacity. Therefore, your oxygen intake increases as does the amount of air exhaled. Breathing in and out through the nose is generally healthier than inhaling/exhaling through the mouth. 

PD: The Smugly

I have become unashamedly smug about the following four focus points in my life so I will share them.

PHYSICAL EXERCISE: my current walking action is my default stance of slightly bent knees and a slight stoop (no, dear reader, not a doorstep or threshold). The chair yoga appears to be correcting this for a few hours after exercising, so I am hopeful. I believe the yoga breathing is part of a long term plan to relax and assist my nervous system. All these are attempts to counter the effects of PD. Wish me luck!

HYDRATION: since my prostate reduction surgery in May 2021 that allowed me to stop taking two chronic medications (yay!) and weaning myself off regular coffee and alcohol I am drinking a lot more water (yay!).

MENTAL EXERCISE: reading, doing word games and crosswords as well as writing these posts - this is my 30th post (yay!) - has kept me sane and mentally fit. 

COMMUNICATION: I try to stay in touch with family (mostly in Durban), friends and acquaintances (in the country and abroad) because their presence is present. What a gift.  

Move it!

In the animated movie, Madagascar, there's a song called "I like to move it..." - in keeping with my present drive here's a YouTube video clip to make us smile. Till next time, dear reader...

(29) PD: not rooted to the spot

Stand tall and walk tall

I took this picture of a tree in the northern Drakensberg in December 2021. I was fascinated with its sideways growth compared to other trees in the area. Plants respond to gravity and so, generally, roots grow downwards and stems grow upwards. However, I am guessing that constant winds sweeping across the mountain, temperature shifts and the altitude could have resulted in its angle. 

Accordingly, dear reader, many people live relatively normal lives till they are eighty years old, unless they have Parkinson's Disease (PD). This tree reminds me of someone with poor posture and Parkinson's Disease (PD) but who is still trying to stand tall. Like me! 

Tips to take away

Until 2015 I used to walk regularly and was conscious of staying reasonably fit and healthy. Prior to that I used to do power walking and enjoyed it. Then my body's "visitor" (a.k.a. PD) started to make its presence felt and I started to slack off, slow down and lack interest. This is probably happening to many of us parkinsed people. 

The tree in the picture above is alone at the top of this slope. There are no other trees with which to share chemicals or signals or to provide support. Interestingly, there is growing evidence that such exchanges between trees exist. I am reminded of the fact that there is no face-to-face support group for parkinsed people in the Durban area. So, I am on my own. Fortunately, I belong to an online support group based in Gauteng that is called Movement Disorders Support (MDS). 

There has been significant growth in the MDS membership that has provided a steady stream of useful links. For instance, through them I have discovered Nordic Walking, a useful walking technique for those with PD, using two hiking poles or sticks. The walking action is best done on a solid surface. I have tried this on grass - I was not impressed with my progress - so, a hard surface is better. Essentially one is emulating a natural walking action and gradually introducing the poles to support and propel oneself forward. 

Something that has also helped is regularly checking my posture in a full length mirror. I'm constantly embarrassed by my slight stoop, so, I try to stand tall and constantly remind myself of this posture. Since last month, the bent tree in the Drakensberg has become another reminder of my stoop. Sorry, tree... 

Make an Obvious, Visible Effort = MOVE

We parkinsed people need to move every day, otherwise, we become stiff and immobile. So, last year I started a daily three-minute routine of doing a gradual stretch of my right arm and right shoulder, two parts of my body that struggle to move. I raise my right arm twenty centimetres higher each time starting with floor level and aiming for the ceiling. This is similar to the movement of the second hand on a clock, where I slowly raise my outstretched hand starting with the 6 position (floor level), then 7 and ending with the 12 (the ceiling). This stiffness is another sign of PD and started five years ago (the first signs of PD appeared in my right thigh ten years ago). Often, I used to have right shoulder discomfort but, since my "clock" regime, that discomfort has become a rarity. Yay! 

Last year I started to experience leg cramps at night in bed when attempting to turn onto my side. I was advised to consider doing yoga. I ignored the suggestion because I am overweight and unfit. Standing and stretching would be too much of a challenge due to my growing lack of confidence and poor balance. A few months ago my brother shared a yoga website with me and it led to my exploring and doing the 25- minute Gentle Chair Yoga Routine weekly. Now I'm challenging myself thrice a week. There are many chair yoga sites on the internet. 

When I lived in Gauteng I used to attend a weekly Dance for Parkinson's (DfP) class with a qualified instructor. The DfP classes originated in New York city. The interpersonal communication during and after classes led to some post-class socialising. Unfortunately, retiring to KwaZulu-Natal put an end to that face-to-face activity. Also, the nearest face-to-face class is at Howick, more than an hour's drive away. So, I have opted for the Covid approach and found these classes online. Local DfP online classes may be found at Dance for Parkinson's South Africa. The New York City DfP site is also available online.

The need to be moving everyday and also checking my posture in the mirror got me thinking about the importance of seeing what I am doing in order to reinforce the action. So, my 2022 focus is the acronym for Make an Obvious, Visible Effort = MOVE ! The Obvious is to ensure I understand the nature and angle of the movement in which I am engaged. The Visible is to ensure that the movements are as exaggerated as possible, especially when it involves my right hand or right leg. This works for me.

Concluding thoughts

The fact that brain plasticity exists is a comforting thought, as I described in post 28. It means that parkinsed people are able to make their brains adapt to deal with the presence of the "visitor". It requires a shift in thinking, a change in lifestyle and a new set of goals. 

Trees have some qualities that we should emulate, such as retaining connections with family and friends. I am grateful for the growing readership of my blog that shows many of you out there, dear readers, are interested in my structured rambling. Remember, if you have PD or are ageing, continue to MOVE . Till next time.

   

(28) NEUROPLASTICITY & MY PD

RECAP In Post 27, I shared some ideas around my freezing and subsequent use of trigger words to initiate internal cueing to assist faltering movement. Many of us with Parkinson's Disease (PD) are reliant on such a strategy to attempt to kickstart dormant motor learning in order to make our limbs move. One example of re-initiating motor learning is overcoming my difficulty - as a PD person - of moving from a seated to a standing position, as illustrated below.

In Post 27, I also focussed on strategies for the re-execution of movement. What is interesting is that while this cueing strategy is supported by the combined effort of a body's muscular, skeletal and nervous systems, I've ignored the fact that the brain has an unfathomable capacity to adapt under extreme circumstances. Let's briefly explore neuroplasticity and my PD.

 

PD: I'm the dope with depleted dopamine

I have PD. I have been told this condition exists because of dwindling levels of dopamine, a complex chemical in my brain. This 'dwindling' has probably occurred over an extended period of time. If that's so, then it could have been triggered by a traumatic brain injury when I was a child (1956) and other specific traumas I can pinpoint during my adult life (1999, 2007, 2012).

From what I've read, dopamine is manufactured in my brain and functions as a neurotransmitter to send messages across my nervous system to deal mostly with movement. For a brief, scientific explanation of dopamine, see the 2 minute video. Besides being a chemical messenger, dopamine is a hormone: it plays a role in mediating rewards in my brain, both as the "excitatory" hormone responsible for my feel-good times, as well as the "inhibitory" type. But it also plays a role in regulating chronic pain, amongst a host of other functions. So, dopamine is no dope!    

What I've learnt about my PD since I retired end-2017 is that, firstly, I have a movement disorder that plays havoc with my muscle confidence. This disorder, coupled with my tremors, instills the constant belief that I need to rest. As a result, I rest more than is required leaving my muscles over-rested and underused. So, I am unable to do simple tasks, although my muscular, skeletal and nervous systems are functional. 

Secondly, being over-rested means my muscle memory converts to muscle-forgetory (see Posts 6, 15 & 16)  making me believe I am incapable of moving "normally". This appears to be a powerful function of my brain, namely, to adjust the body's functions to suit what is the strongest. When my right side started weakening due to the impact of PD my left-hand automatically took over (see Post 8 regarding dexterity) and dominated certain right-hand functions. 

And thirdly, because my nervous system controls my sense of temperature, as a parkinsed person, I am now more sensitive to temperature shifts, both hot and cold. In Post 9 I referred to "trevers" i.e., tremors + shivers, when it gets cold. 

So if my muscular, skeletal and nervous systems are okay, then what is the problem? Probably the decreasing amount of dopamine in my Substantia Nigra (see 2 minute video). Some of this is speculation on my part, so in keeping with my speculative stance I will look at the positives such as my shifting dexterity and cueing to re-initiate my motor learning. Besides the three systems just mentioned, dear reader, let's not forget the brain and its plasticity. 

What is neuroplasticity?

There was a time when scientists believed that the creation of new neurons (i.e. neurogenesis) stopped shortly after birth but that has been proved to be incorrect. The notion of neuroplasticity - also called brain plasticity - is based on evidence first recorded by a Polish neurophysiologist, Jerzy Konorsky, in 1948. He wondered if it was possible to alter existing neural connections in the brain through conditioning (naturally, Skinner and Pavlov were also in this think tank). Later it emerged that new experiences linked to change could influence the brain to reorganise most neural pathways and even generate new ones throughout one's life. Neuroplasticity is a combination of the essence of the nervous system (i.e. neurons) and the brain's capacity to be remoulded (i.e. plasticity) in the face of an individual's challenges. 

One example of 'remoulding' is the ability of a musician such as Ray Charles to excel at tasks generally achievable by a sighted person. He was not born blind and his musical ability as a singer and pianist was superior to that of many of his sighted contemporaries. It could be said that he was able "to perform non-visual tasks better than those with sight". I had the privilege of attending one of his live performances in the nineties and his musical performance together with his piano stool antics made it unforgettable! 

Another example is the phenomenon of phantom limbs where an amputated limb still appears to exist in the mind of the amputee. This supports speculation that every person's brain contains the equivalent of a detailed diagram of all bodily functions and accompanying support systems to sustain the idea of neuroplasticity. Below is an illustration of brain plasticity. 

How experience changes brain plasticity

Regarding the principle of plasticity, it is possible that my advanced internal cueing leans towards functional plasticity. According to Psychology Today plasticity makes it "possible to change dysfunctional patterns of thinking and behaving and to develop new mindsets, new memories, new skills, and new abilities". 

A brief deviation: my advanced cueing for dressing, walking and climbing stairs would be similar to creating a learning strategy called a mnemonic. This allows one to remember a series of words or names in a specific order. For instance, when trying to remember the colours of the rainbow in order, I remember this mnemonic: Richard Of York Goes Battling In Vain. Each first letter is the first letter of word representing a colour, namely red, orange, yellow, green, blue, indigo, violet. The silly sentence about Richard is a primary trigger that takes me to the source, the actual colours. 

This seemingly long process is, in my experience, how successful remembering can occur. So, my shift from saying "toe-toe" to counting from 1-6 when climbing six stairs is my way of creating a sense of continuity (from a green light to amber - see Post 27) in my stilted movement. Maybe, the fact that it works is my brain telling me it has accepted an amended cue and indicating that a form of learning has taken place. Hmm...evidence of plasticity?   

This perspective of neuroplasticity is an enlightening one for me as a parkinsed person. I have scratched the surface of this phenomenon to provide food for thought, dear reader. There is also recent research on exercising and neuroplasticity that I have included below to further whet your appetite. 

Neuroplasticity and exercise: more food for thought...

Research published in 2019 found that the impact of aerobic exercise resulted in positive change in the brain plasticity of subjects with PD (see EXPANd trial article no. 2 in Resources below). The article focuses on two groups, (1) a HiBalance and (2) a HiCommunication group. Their broad focus area was on exercise as a form of non-medical intervention for those with PD, particularly in the light of the unpredictable nature of current pharmaceutical "remedies". 

Another strand of research also published in 2019 is on healthy subjects without PD and the impact of extreme aerobic exercise on their brain plasticity (see "Exercise-Induced Neuroplasticity..." article no. 1 below). It focuses on exercising among healthy individuals and indicates that "fit individuals show greater neuroplasticity induction than unfit individuals". 

Happy Holidays, dear reader, and thank you for visiting this blog. Till we connect in 2022.

Resources

Neuroscience: click on desired link & when site opens scroll down for short video.

1. Know your brain: Substantia Nigra
2. 2 minute video: Dopamine
3. 2 minute video: Parkinson's Disease
4. 2 minute video: Huntington's Disease
5. 2 minute video: Caffeine (vs adenosine)  
6. 2 minute video: Reward system

 Articles

1. This journal article focuses on the effect of exercise on healthy individuals without PD. If you're bored, then only read the Abstract (at the beginning) and the Limitations and Conclusion paragraphs (at the end). "Exercise-induced neuroplasticity: a Mechanistic Model and Prospects for Promoting Plasticity." by El-Sayes et.al. (2019). Available as a PDF.
2. This journal article focuses on individuals with PD: "The EXPANd trial: effects of exercise and exploring neuroplastic changes in people with Parkinson's disease: a study protocol for a double- blinded randomized controlled trial. By Franzén, et.al." (2019). Available as a PDF. 
3. How our brain adapts to impairment: "Loss of Sight and Enhanced Hearing: a Neural Picture." 
4. A blog site for PD people like me: "Fighting Parkinson's Drug Free."
5. A useful easy read on brain plasticity in a South African publication "Psychology Today."  
6. What is neuroplasticity? Positive Psychology
7. This chapter: Neuroplasticity after traumatic Brain Injury by Su, Veeravagu & Grant, focuses on traumatic brain injury and neuroplasticity. If you're bored then just read the introductory paragraphs, the section on Neuroplasticity and the Conclusion.

(27) PD robot: GREEN (go); RED (find AMBER)...WTF!

NB (27) above indicates the numerical order

Lights, action...freeze frame!

During the past two months four water valves in my residential area burst resulting in our being without water for up to three days at a time. This might continue as we are in an old part of Durban with crumbling infrastructure (hmm...like that of my body). I had a number of freezing incidents during these periods. For instance, once, I was unable to get out of a recliner, something that had never happened before. Also, in bed I have been struggling to turn onto my side. I assumed it was the PD but maybe my para-olympic mind-games had begun again!  

My immobility may have been because missing a daily shower resulted in missing my daily stretching routines in the shower. We know the aged should be active for as long as possible, daily, otherwise, their muscles will stop responding to requests to move and become sluggish. It is likely that my muscles were unable to respond (A) because of my inactivity and (B) because of my PD. Or maybe (C) I need to have regular physiotherapy or biokinetics.

Further analysis of my freezing problem, led to my developing an amended set of previously reported Parkinson's Disease (PD) strategies called cueing that I will share later.

PD: advanced cueing & triggers 

Let's start with an analogy. Small parts of the USA between the 1920s and 1940s, had two way traffic lights, that were red and green only, as illustrated in the picture below. These were suspended above a few major city intersections to control the flow of pedestrians and traffic. An amber, third light was only introduced in the 1950s. 

In the context of PD, stopping an action should be discouraged. If the equivalent of red lights are our reality, then we should encourage thinking of amber lights to introduce the possibility of further action.

  

Recently, I discovered that what I called 'internal/remedial messaging' (Post 17) is referred to by neurologists as "internal cueing". So, I will adapt. "Internal cueing" is used, for instance, by athletes to talk to and to understand micro-movements of their limbs by making actions transparent and visible in their minds. This is to allow them and their coaches to improve their performance. 

 

Parkinsed people can also use this technique of cueing to address their faltering movement. But this requires us to be able to isolate specific actions involved and then to break them down into micro- movements. Only then can one assign specific words, phrases or even tunes - all regarded as cues - to initiate and to execute these actions. Isolating and identifying specific micro-actions would be like asking you, right now, to find the animal in the picture below: focus and you will find it. (Got it?)   

My own system of cueing was based on using single action words to assist the limbs to move. For example, when pulling on pants I would say "slide" and then "slip" to visually picture my hands sliding my pants up my legs and then slipping my thumbs into the waistband. Or walking up flights of stairs I would say "toe" when putting my first foot down on a stair and "toe" again when moving the other foot up to the next stair. After my recent immobility scare (courtesy of the water outages) I amended my single cue to a series of multiple cues and associated movements. 

My amended cueing strategy is based on the idea that a single cue triggering a single movement is like going from a green to a red light. Saying "toe" only takes me up one stair. However, counting from "one to six" when ascending a single flight of six stairs propels me up one whole flight and then I can start at "one" again for the second flight without saying "toe" six times. So, my counting is a substitute for repeating "toe-toe" and similar to using words that trigger actions. Embedded in such triggers are meanings associated with specific series' of actions. 

Advanced cueing: as easy as 1,2,3,4

Let's unpack specific conditions and my understanding of freezing. In a standard flow chart there are a set of "if-yes-then" and "if-no-then" conditions controlling a process. This is aligned to a definitive red and green robot or traffic light analogy where flow is either on or off. There is no room for the equivalent of an amber light. So, let us consider the idea of a green and amber traffic light.

Green (go) and amber (approach with caution) is more apt to my understanding of PD as it introduces the possibility of movement and flow. So for me as a PD person, initiating movement may be regarded as a set of "when-I-then-I" conditions. The green and red traffic light represents a start-stop implementation of a single action where a blockage in the pathway (dopamine depletion?) results in my freezing. But green (go) and amber (approach with caution) allows me to confront the freezing. 

EXAMPLE When attempting to stand up from a seated position I used to have to repeat the action of getting up many times before being able to stand. It must have looked Chaplinesque. It used to be a single-stage failed action. But, introducing a green and amber traffic light to represent the when-I-then-I system of internal cueing, encourages a sustained multi-stage motion for me as a parkinsed person. 

ACTION So, when-I wish to stand (1) then-I push my legs forward and straighten my knees, (2) then-I push myself away from the seated position and shift my weight forward, (3) simultaneously ensuring my head and neck are as far forward as possible and at right angles to my torso (so that I do not fall back into my seat) and (4) then-I stand up. Breaking the action down into four stages ensures me a 90% success rate of standing and not falling back into my seat. The critical point is that the trigger words are 1,2,3,4 and not a series of words or phrases. 

And what is fascinating, is that 1,2,3,4 also works as my cue for climbing stairs: a revelation! And so far it has been effective!! I should count my blessings...

Next post

Constantly adapting to and creating new habits is central to the brain's ability to reorganise and rebuild synaptic ability, i.e. neuroplasticity! My growing ability to regenerate cues and multi-action movements are based on the brain's ability to relearn. And it needs a whole post, so I promise to pay attention to neuroplasticity in post 28. 

Some Resources

• A strategy for PD balance when standing and turning is spotting (Post 6).
• Article on PD human-computer interaction: High-accuracy detection of early Parkinson's Disease...while typing.
• An early detection site for PD involving your keyboard and mouse is at Key Sense - it is only for those who've not been diagnosed with PD.

(26) PD: who's the boss?

NB (26) above indicates the latest post & numerical order

Recycling my memory?

Years ago, I needed to upgrade the memory of my desktop PC. So, I bought an upgraded module with greater memory and then sold the old one to someone with a similar machine and motherboard: sorted. As a person living with Parkinson's Disease (PD) I wish I could recycle my brain and memory like I did with my PC without having to undergo something invasive, such as deep brain stimulation (DBS). 

If you have read my earlier blog posts you will know that I chose to avoid chronic PD medication since I was diagnosed in 2013. Subsequently, I have focused on alternative approaches and discovered strategies that help my gait, balance and mindset. All of these strategies together with my personal theories, appear in earlier posts. Today I will revisit the idea of retraining my brain. 

Next time, in post 27, I will attempt to unpack neuroplasticity and how this might relate to me and others with PD. (I've included this link by way of preparation as there's a short, explanatory animation).

Train a brain and gain

Srini Pillay wrote a piece in the Harvard Business Review (HBR, June 2017) titled:  The ways your brain manages overload, and how to improve them. To support these 'ways' he reduces the brain's sophisticated roles and functions to that of machines with which we are familiar at home and the office and provides six principles to improve a brain's functions. An excerpt with embedded links follows:

"...the human brain - your brain - is metaphorically endowed with a vacuum cleaner that sucks up information; a container for short-term memory; a blender for integrating information; a memory bank for storing long-term information; a garbage disposal for getting rid of information; and a recycling machine extraordinaire. Using each of these functions effectively is critical if one wants to manage information overload..."

My brain - and yours, dear reader - has learnt to carry out sophisticated, overtly physical tasks such as walking, driving, playing sport, etc. as well as overtly mental tasks such as teaching and learning, constructing theories, completing crosswords, etc. over many years. In fact, since our birth. However, when Parkinson's Disease (PD) hijacked my system it stole my confidence, my ability to move and sometimes my ability to think. In my opinion, my hijacked PD brain is in a constant state of overload! 

I wish to focus on Pillay's (2017) third principle in his article, regarding selective filtering. With reference to one's "placing a filter on the [short-term memory] container", he says that a short-term memory container is like a mug of ideas where space is limited. He suggests we develop a "proactive and reactive" selection of daily information so our mugs are not filled up unnecessarily. 

So, according to Pillay (2017), information selection in a "reactive" manner is when there is "TMI" ("Too much information") resulting in our talking to our brains and telling ourselves to ignore it. I suggest that such talking is similar to the notion of 'cueing' that I have described earlier. As a consequence, a "proactive" selection of information is when we actually engage in "preparing" our brain, laying the foundation, for instance, to ignore "TMI". To illustrate, when we're in a meeting, we can switch off our mobiles or select a "do not disturb" function to selectively remove "TMI" so there's less distraction. 

For the past five years I have been actively composing cues for myself and then consciously executing them when required. I have been laying new foundations for my basic functions of walking and dressing. This "cueing" could be similar to "reactive" information selection. 

Selective filtering: "reactive" info selection

MY BIG QUESTION: Why does existing use of old muscle memory - it's worked for nearly seventy years - make me freeze during a familiar action, such as putting on sandals or getting up from a chair, yet, my reactive response or cueing bypasses the now old muscle memory and I am able to complete those actions? And, remember, I am not taking any PD medication.   

I am aware that driving a car is regarded as part of one's implicit or unconscious memory and represents an action that is not consciously recalled. However, also on this list is dressing and walking. I do not understand how and where my reactive approach has allowed me to bypass the impact of  Parkinson's and make parts of my dressing and walking a conscious recall. I am reasonably confident a neurologist would provide some theoretical answer to clear up my confusion. 

And one possible answer, dear reader,  is the neuroplasticity of my brain. I will ponder this imponderable - like Pinky and the Brain - and attempt a response in the next post. 

For those inclined: finely-tuned brains

Playing a musical instrument is supposed to be the perfect stimulant for those with PD. For the past 5 years PD has reduced me to being a listener. 

My favourite overseas jazz band is an American group called Fourplay. In the link below they perform live in Japan: Fourplay live in Tokyo (2013). Act 1 (the first 35 minutes) is the band playing on their own and is for jazz lovers. Act 11 is them performing for about an hour with the New Japan Philharmonic orchestra, combining classical and jazz. Quite a multitasking accomplishment for the conductor Taizo Takemoto, the Fourplay composers (Bob James, Harvey Mason) and all the musicians. 

Till next time, stay safe.

(25) PD misdiagnosis: Robin Williams & LBD "terrorism"

NB (25) above indicates the latest post & numerical order

To be or not to be...

I started writing this blog after watching the movie Awakenings (1990) a few times in 2019. As a parkinsed person I was fascinated by the trial and error approach to the treatment of Parkinson's Disease (PD) and the possible consequences due to PD medication. Subsequently, a review of that movie and a BBC documentary about the GDNF trial also involving a PD remedy became an important part of two early posts (3 and 4) of this blog. 

The movie Awakenings is about patients in a psychiatric hospital in New York who appear to be immobile and not responsive. They are mostly victims of encephalytis lethargica, a European epidemic that might have started during the early 1500s but only identified and labelled in the early 1900s. This neurological syndrome presented itself in two phases and as the latter clinical phase resembled PD, a PD drug was used on the patients. Part of my original post is below.

"The movie starts with a young boy gradually becoming dysfunctional and one sees the impact on his life as a teenager. Fast-forward about 50 years and that child is one of a group of adults, played by Robert De Niro, who appears to be displaying PD-like symptoms in a psychiatric hospital. In an attempt to bring him and others out of their catatonic state, an experimental drug called L-dopa is prescribed by Dr Sayer, played by Robin Williams, who has already made startling observations of some of his patients. Although L-dopa was developed specifically for PD, the symptoms presented by patients with encephalitis lethargica are similar, hence the doctor's decision to prescribe it. Dr Sayer, prior to joining the psychiatric hospital, was a medical doctor and serious researcher..." 

Excerpt, Parkinson's: to be or not to be, (3) PD experiment in a movie, April 2020.

So, while encephalytis patients were 'displaying PD-like symptoms' they did not have PD. There was no misdiagnosis but, I suppose, reasonable assumptions made regarding the symptoms and possible treatment. There was a measure of effectiveness in prescribing L-Dopa but it came at the expense of other symptoms. PD is a complex neurological disease that has kept medical science guessing in the way that Covid-19 is doing right now. Sadly, Dr Sayer aka Robin Williams suffered the same fate as his patients in the movie: a misdiagnosis. A real life tragedy!  

Robin Williams' shadow of his former self

It is tragic that neurologists were unable to diagnose Robin Williams' symptoms accurately, because of the complex nature of Lewy Body Dementia (LBD). LBD is a progressive dementia that causes problems with mental abilities because of microscopic deposits in the brain that gradually disrupt its functioning. According to his wife, Susan Schneider Williams (in picture above), in a journal article published in Neurology, entitled The terrorist inside my husband's brain (September 2016) two years after his death, his suicide had been "at the end of an intense, confusing and relatively swift persecution at the hand of this disease's symptoms...". It was only when she received the coroner's report three months after his death, that she knew Robin had not had PD as diagnosed, but LBD. She states in the article that, according to that coroner, "almost no neurons were free of Lewy Bodies throughout the entire brain and brainstem".       

LBD, according to the NIH Medline Plus magazine, impacts on movement and sleep as well as creating hallucinations. It impacts severely on one's judgement, one's mental speed, thinking on one's feet and one's understanding. One goes from being rational and functional to being irrational and dysfunctional as a result of the disruption caused by the microscopic clumping of a protein in granular form. As a result, one's cognitive ability literally seeps out of one's brain. The illustration below depicts the seepage.  

Illustration of LBD, courtesy of NIH MedLine Plus magazine

Film roles versus Life's roles

It is significant that during Robin Williams' life he played the roles of alternative and critical thinking professionals. Each role portrayed characters in control of their thinking and their actions, although often in opposition to what would have been regarded as conventional. Some roles depicting this are that of a psychiatrist (Good Will Hunting), a physician (Patch Adams), a neurologist (Awakenings) an absent minded professor (Flubber) a Russian medical specialist (Nine Months) and a teacher (Dead Poets Society). In these roles, his characters generally sought an alternative approach to problem solving and resulted in some form of character building. 

In real life, in the few years leading up to his suicide on 11 August 2014, doctors and neurologists were unable to diagnose Robin's symptoms with any degree of certainty. They were unable to provide a 'Patch Adams' style bandaid to halt the mental retrogression. The tremors, insomnia and constipation, amongst other symptoms, led the medical specialists to believe that he had PD, so PD medication was prescribed. If this had been a scripted movie then the character Robin Williams should have survived. But he he couldn't. Susan recounts in her journal article "The massive proliferation of Lewy Bodies throughout his brain had done so much damage to his neurotransmitters...that he had chemical warfare in his brain." Terrorists had struck.

In the months leading to his death, his wife Susan describes in her article how he suffered with "paranoia, delusions...insomnia, memory and high cortisol levels...". Uncharacteristically, during a movie shoot of Night at the Museum 3 he struggled to remember his lines. He wished he was able to start life all over and once said to Susan "I just want to reboot my brain." However, the LBD terrorists had already infiltrated and taken his brain hostage...there was no turning back the clock.

Dear reader, I have been moved by Susan Schneider's article and if you know someone with PD, I recommend you read it as there are some similarities. Also, there are American and Australian documentaries on Robin Williams available online but two that stand out and are informative are these:

• Robin Williams: come inside my mind (2018); 
• Robin's Wish: a conversation about Lewy Body Dementia (2020)

Till next time. Stay safe.