(19) PD clause: take care of head and limbs will follow

NB (19) above indicates the numerical order 

The past 

In December 2015, we travelled by cable car, into the mountains, in order to get to a monastery on Lantau Island, Hong Kong to see a giant buddha. While my wife and the grandchildren explored the nearby village, I sat waiting nearly an hour for the mist to lift so I could see the 34 metre high bronze buddha (picture below). The trees on either side of the buddha indicate its size and distance from my vantage point. What a view! It was worth the wait.  

The present

Parkinson's Disease (PD) has severely compromised my movement since 2013 and I have spent years searching for measures to ease the PD muscular lethargy. I use the word 'ease' as I wish to be realistic. As mentioned in previous posts, I have already used wrist weights, a monopod that doubles as a walking stick, a fiddle spinner, stress balls and small dumb bells. I've learnt to close my eyes to counter my muscle "forgetory" as my muscle memory is waning. 

In addition, I have developed a system of corrective messaging where I constantly tell my muscles what to do. I guess it's my attempt to conjure up virtual dopamine. One example is saying "toe-toe" - a contraction of a longer message for normal walking - when climbing up four flights of stairs to our third-floor apartment. In the past four months I have neither stumbled nor tripped and my unscarred shins will attest to that: success!

Opting for a drug-free approach to PD is taking The Pinky and the Brain way. Well, the Pinky in me decided eight months ago to try out the laser therapy in Durban and that has helped reset a large part of my brain. The next step was to review my decreasing mobility, especially during the lockdown. Enter the mini bike.

REVIEW: Threshold sports mini bike

Earlier this year I came across a stationary, motorised, exercise bike to help with arm and leg movement during the COVID-19 period when beach walks were not an option! The bike retailed for around R10,000 overseas. The cost bothered me so I searched for an alternative and found a few that are available in-store and online. I opted for one that cost around R2,000. 

The non-motorised, manually driven Threshold sports mini bike (in picture left) was delivered to my door by an online supplier a few weeks ago. It required a bit of assembly that took me over an hour due to weakening muscles (sigh!) but once complete it was perfect. 

It is 35cm high and 40cm wide so it may be placed under a desk or table for cycling using one's legs and one's arms and is easy to store. As it weighs just under 9kg it is relatively easy to lift onto a higher surface for cycling using one's arms. I have discovered that if it is on a solid surface about 40cm off the ground, it provides a challenging arm exercise while seated. The mini bike mechanism - a magnetic flywheel - is quiet and has 10 levels of resistance. Naturally, I am on level 1 and am managing between 10 and 20 minutes at a time. It is too soon to tell what effects it will have but it has been a major confidence booster. And being parkinsed means a gradual erosion of confidence, so...

An important feature of the mini bike is that I sit upright in a chair when I cycle. Years ago, when I used to go to a gym, sitting astride a stationary bike challenged my balance, and I felt compelled to hold onto the handlebar. However, when I am on the mini bike my back is supported, I am balanced perfectly, and I can do whatever I want to do with my hands and arms. 

Since retirement in December 2017 I have only been able to walk at supermarkets and large malls with the assistance of my walking stick or pushing a shopping trolley. Being able to cycle for 20 minutes without stopping has been an amazing experience. It is re-introducing the notion of coordination to my gradually weakening limbs and their muscles.     

Back to the future

On 04 January 2021 I will be back in the neurolaser clinic for therapy. I have also started reading Michael J. Fox's new book called No Time like the Future - I'll share some thoughts on that sometime in the future. 

2020 has "Mcflown" past, courtesy of COVID-19. I hope that you, dear reader, will continue to stay safe till 2021.

                                                    

(18) Forks and food for thought!

NB (18) above indicates the numerical order

Being grateful for being

By the end of December 2020, the following should be true:

• I would have completed 23 sessions of therapy at the Durban Neurolaser Clinic; 😲
• I would have experienced nine months' COVID19 lockdown; 😕
• My tremors would have increased (more Elvis Presley); 😔 but
• I should be a tad "fitter" than I was earlier in 2020 😊.  

I received my first salary in 1977, I was diagnosed with Parkinson's Disease (PD) in 2013 and I retired in December 2017. While my profile during that time morphed from power walker to tremor carrier, I am grateful for this unfolding experience except, of course, for the past three years' daily battle against PD.

The picture below of a weaver building a nest, starting with that initial hoop-like structure, was taken in the KwaZulu-Natal, Midlands in 2017. At that point of the build there was no perfect beaker shape nor underside entrance, just the start of a journey of persistence rooted in blind faith. Let's explore that idea.            

Of forks and roads

In 1970 I had a matric certificate with commercial subjects so I could not enter university. Consequently, in 1971 I enrolled at a larger high school in another city where I repeated standards 9 and 10 (i.e. grades 11 and 12) and included maths and physical science for the first time. What a challenge! I arrived at 'varsity in 1973 after being confronted by my first fork.    

When I received my very first salary cheque in 1977, there was no clear view of the future. I guessed that on life's journey, there would be choices to be made and those would determine it. 

In 1984 I resigned from my first job - a permanent post, and another fork - and registered full-time for a Higher Education Diploma, hoping it would better prepare me for lecturing. In 1985, after completing the diploma, I was offered a job that included facilitating the development of university students' academic literacy. In 1990 I joined another institution to drive a computer-assisted academic literacy programme, one of a few nationally. During this stint I realised that university teaching staff were also faced with challenges and by 2002 I had crossed over to facilitating the professional development of teaching staff. 

In my fork-filled higher education career, between 1977 and 2017 I had the privilege of working at universities in Gauteng, KwaZulu-Natal and the Eastern Cape. Like our weaver above, each time I examined my practice and sought change, I believed it was time to build my nest elsewhere.     

In retrospect, [The] Pinky and the Brain analogy sustained in the past few posts has become an important element of my 'persistence' and life choices. I think I have always had an adapt-or-die philosophy. Also, I have been strongly rooted in the notion of being a practitioner-researcher in contrast with being a research-practitioner, as explained in a previous post.      

Is it safe to indicate?

It seems that choosing which fork to take in a road can end up being either a poor choice or provide an opportunity to innovate, and this can manifest in different contexts. 

Between 1987 and 1999, for instance, many higher education academic literacy programmes were packaged for specific target groups of students. These programmes were based on linguistic assumptions that were generally appropriate for their countries of origin and embedded theories. So, I sought an alternative sourced from experience and my practice. 

In 1987 I decided to use visual and audio excerpts from American television series, movies and radio dramas as the basis for additional "Bridging English" classes. This approach was in order to stimulate students into engaging with English language differently. My approach was successful and student pass rates improved significantly. Th stigma attached to "second language" classes had been minimised and  additional classes were scheduled to cater for growing interest. In 1979 the programme attracted American "social responsibility" funding that benefited both the students and the university.  

By 1990 I was offered an opportunity at another institution to drive a university-wide initiative using computer literacy as an incentive to improve written English language. I was confronted by another fork. An exciting time to indicate and to change lanes on life's highway. A common mistake due to mother-tongue interference is that first-year university students writing in isiZulu would often omit the article preceding a noun. One reason is that articles and nouns in isiZulu are combined into a single concept, e.g. an office in English is "ihovisi" in isiZulu.

This lead to many such students being marked down by lecturers assuming it was merely careless writing. However, when lecturers were sensitised to this phenomenon, lecturer bias was transformed into lecturer insight. Such insights, together with the computer-assisted literacy programme run each semester, led to our team making a significant impact on hundreds of students between 1990 and 1997. But let's return to alternative remedies for parkinsed people. 

Can abyss be dangerous?

Dr Javid Abdelmoneim recently examined the complex world of cannabis in a BBC documentary entitled Cannabis: Miracle Medicine or Dangerous Drug?  He visited a joint (pun intended :-) Canadian-Danish pharmaceutical enterprise cultivating cannabis plants, he  participates in a British clinical trial into cannabis and he travels to Israel to interview a cannabis researcher and cannabis service providers. Also, there is coverage of a six-year old whose epilepsy is cured after taking cannabis oil. 

For me, there is credible evidence of the wide range of applications of cannabis, as well as valuable insight into the complex calculation of deciding on the proportion of CBD and THC required by each individual. The dosage issue is similar to that unpacked in the L-dopa Conundrum article presented in an earlier post. My cannabis fork was that after three years of avoiding medication I tried cannabis oil orally in 2016 but without any idea of its quality or what proportion of CBD-THC was present. It had no effect on my tremors but I acknowledge that they were mild at the time. 

I am now interested in trying cannabis oil again, especially for the tremors. And so I will revisit an old fork... 

Next post: mini-bike review

In the next post, dear reader, I will review a new mini exercise bike with pedals that may be propelled by either both feet or both hands. So, is it a nifty piece of equipment for PD sufferers and others, or merely another useless gadget? We'll see.

(17) PeeDee and the brain |Part2|: am I my own enemy?

NB (17) above indicates the numerical order

(It's been six weeks since I posted. There have been a few revelations that I needed to verify, so I hope this read is worth it.)

A PD reality check

Recently, I was informed by a KZN branch of the SA National Blood Service (SANBS) that my Parkinson's Disease (PD) tremors make me a risky bleeder and I needed (1) a medical doctor to confirm I was ok to donate. That is their normal protocol and acceptable. However, I also needed (2) to present proof of my PSA levels (indicates the status of my prostatitis). Only then would SANBS confirm that I could donate. Combine (1) and (2) and my reality "cheque" has bounced. Not only would it have been my 128th donation but one more purpose in my life may have been removed. Grrr! 

I'm now, officially an ageing KZN person with PD. I do miss all the staff at the Atterbury branch of the SANBS in Gauteng! I also miss my close friends and the Dance for PD support group there.  

Pinky and my Brain (continued...)

I need to recall an excerpt from my previous post (no. 16) for context in this post.

 

"[...] let's assume PD is represented by 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)... 

The Pinky in me appears to be benefiting from the laser therapy while the Brain is mounting constant attempts to take over my world. Like Pinky, I often appear to be overcome by the intruder, Brain - represented by the intensity of my tremors and my increasingly awkward gait - but my not being on PD medication allows me to resist more deliberately and more often. Good stuff, Pinky. Narf!"   

I am still erratic regarding my consistency with indoor exercise and walking outside. However, a few weeks ago after my fortnightly therapy, I read this blog from the beginning, thoroughly. And it was uplifting. I felt Pinky spurring me on to see posts with fresh eyes. My own Pinky resistance movement.

The lack of confidence to which I have referred as a result of my PD has been countered by strategies that work for me, such as the remedial messaging, consciously telling myself what to do. I realise that the messaging has not been explored to its limits. My so-called Pinky resistance had muted echoes of what happened in Europe during World War 2, in South Africa during liberation and in Egypt in 2015: I've been "gathering intelligence" regarding my 'intruder', PD, in order to wage resistance. And at what cost?

Frankly, at little cost. All "intelligence gathering" has been an internal operation and my handlers a.k.a. Pinky, have sworn allegiance to me! It's an Ari, über alles! approach. In the picture below I managed to capture a likeness of a Pinky lurking behind me, the old tree with PD... 

Tips and tricks: update

My gradually weakening body seldom does any stretching, so back to my basics. A few weeks ago I discovered that to put on footwear, I should silently repeat "bend-two-three stretch-two-three" and this has started to work for Pinky and me. I do the same when soaping myself in the shower. The corrective messaging appears to strengthen Pinky's resolve. Now I need to find a way to address my mood swings.

UPDATE OF TIPS FOR ME: 

• For relief when seated, I do repeated shoulder hunches as far forward and as far backward as possible. Then, I raise my feet off the ground to knee height, or constantly cross one foot over the other to ease the tension. 
• When standing for a while, I constantly shift all my weight from one leg to the other. This is easier with a walking stick. 
• To ease tension in my hand I hold or touch a small stress ball in the palm of my hand without squeezing it. This often eases my tension and generally reduces the intensity of my tremors.
• To put on footwear I first close my eyes then repeat, silently, "bend-two-three stretch-two-three" while extending my hand to connect with the footwear and to ease it over my foot.
• To walk up stairs I consciously focus on my feet and when ascending I repeat "toe-two-three" as each foot reaches a tread. 

Laser therapy and Pinky and me!

I have now completed 21 sessions of low intensity infrared light therapy mostly around the cranial and cervical areas. Since last month I started having fortnightly sessions and there have been no side effects or withdrawal symptoms bar the usual 24-hour adjustment period for my body immediately after therapy. I plan to continue with the fortnightly sessions while I can...till next time, dear reader.

 

(16) PeeDee and the brain: am I my own enemy?

What is realistic?

As you know, dear reader, I have been struggling with the notion of the following: what is fake in the context of being parkinsed? Is it an alter ego, my nervous system and brain as well as the presence of high-jackers as described in an earlier post? These perceptions are depressing when considering both the recorded and the experienced issues surrounding Parkinson's Disease (PD) and the impact of medication. In this post I have decided in favour of pondering on my anguish against the backdrop of recent relief and I hope this lasts. That is, the 'pondering' and not the 'anguish'. So, let's ponder - but first, a detour... 

[The] Pinky and The Brain!

Those of you who were watching television in the mid-nineties might remember an animated series that involved adult-like adventures. Sometimes they interacted with famous people, like former president Bill Clinton. Ostensibly a children's programme, "[The] Pinky and The Brain" was about two rodent-like creatures. Described as "laboratory mice" in the theme song, [The] Brain (the shorter character on the right of the picture below), supposedly the cleverer of the two, uses [The] Pinky (the taller character on the left) as a foil for his fantasies. However, while [The] Pinky appears to be the fool, [The] Brain is never actually able to execute his ingenious plans to take over the world. It is possible that [The] Pinky was created as court jester to provide a sounding board for [The] Brain's frivolous fantasies, thereby giving him some credence. 

While [The] Pinky appears to be the subservient, bumbling fool and [The] Brain appears to be deep, Brain is never able to execute his devious yet ingenious plans to take over the world. So, who is fooling whom? Is one of them 'fake' or was it pure edutainment?

My wife and I loved watching this programme with our children.  So, if you have ever pondered a ponderable, for instance, what do the actual persons doing [The] Pinky and [The] Brain voice-overs look like, go to this interview with actors Rob Paulsen and Maurice Lamarche. Also, if you are curious about my pre-occupation with the use of 'ponder', then do check out this short compilation of excerpts of the best of "Are you pondering what I am pondering..." in [The] Pinky and The Brain. 

PeeDee and my brain

In previous posts I have outlined my assumptions regarding PD and how it has 'highjacked' my body. I also referred to PD as an 'intruder' and how I have had to fight in order to counter the highjacking. Well, let's assume PD is represented by 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. 

The Pinky in me appears to be benefiting from the laser therapy while the Brain is mounting constant attempts to take over my world. Like Pinky, I often appear to be overcome by the intruder, Brain - represented by the intensity of my tremors and my increasingly awkward gait - but my not being on PD medication allows me to resist more deliberately and more often. Good stuff, Pinky. Narf!   

So, am I responding to my new, "normal" alter ego represented by my PD, and a manifestation of my new muscle memory: a Pinky approach! Or, is it "fake" and merely a series of new muscle responses reacting to mood swings and making a grand entrance at appropriate times: a Brain approach? Whatever the case is, here are some facts:

• I was diagnosed with PD in 2013;
• I opted to avoid all chronic PD-related medication;
• The tremors have become progressively and noticeably worse since 2016; 
• Physically I am unfit, overweight and unable to make certain reflex movements;
• I started laser therapy in May, 2020 - four months ago;
• Laser therapy has woken up the mental part of me that has been dormant since 2017; 
• Recently, I have had the urge to do simple exercises everyday; and
• The Brain has always advised me against all exercise in favour of staying in bed!    

Am I in touch with my inner Pinky, with my alter-ego, with the Ari that has been shielded from succumbing to PD because I am not on medication? Or is this a fake sense of well-being before I progress to another phase of being parkinsed? 

I will start weaning myself off the weekly laser treatment at the end of October and attend fortnightly therapy sessions. Stay tuned, dear reader.  

(15) PD-2020, Covid-19 and triggers

(August Silence. We have moved permanently to retire in KZN and as our Gauteng house is for sale we needed to do a final clearance. So, we drove back to Gauteng in the middle of a warm August spell so the days were pleasant. I've recovered from the drive so now I can continue with the Parkinson's Disease saga. Also, since 07 September,  I have resumed my weekly laser therapy.) 

PD and Covid-19

The impact of the Covid-19 epidemic in South Africa and lockdown resulted in a tense time for the aged, especially those with co-morbidities. For the past five years my wife and I have avoided taking an annual flu vaccine, in an attempt to bolster our immune systems. However, this year, hype and unpredictability around the nature of coronavirus led to our taking both the flu and the pneumonia vaccines. That was my primary reason for taking the vaccines and, so far, so good.

Besides my age, another reason for considering these two vaccines is my preoccupation with triggers and PD. These triggers exist in both my "muscle memory" as well as my "muscle forgetory" (see earlier post) and lead to reactions that I have to counter or minimise. Triggers often lead to a physical manifestation resulting in tremors, leaden limbs, anxiety setting off excessive perspiration or even shortness of breath, the latter being a manifestation I have noted for the past ten years. So, recent bouts of shortness of breath (specifically during the past two months) have made me wonder if I had picked up the virus. But then I had to remind myself of similar instances of 'shortness of breath' predating the epidemic...

Rooted or booted

The picture below was taken in 2019 in Riebeek Kasteel, Western Cape. The tree's visible roots are vital to the tree's existence and are not superficial, like warts that are often just excess skin that may be removed. I have shared this picture to illustrate the presence of Parkinson's Disease (PD). If I am the tree, then my PD is similar to this tree's root systems. It has invisible, underground roots that have infiltrated and now commandeer the engine room of my nerve and muscle infrastructure. It also has roots above ground that represent visible manifestations, such as my tremors, leaden limbs and awkward gait.

I will attempt to sustain this analogy rather than leaf it alone 😏. My triggers exist within the equivalent of the tree's original, underground root system and, therefore, exist in my memory as past trauma or unpleasantness. Allow me to unpack this. Whenever it is cold I shiver but the shivers become tremors which I have referred to as "trevers" in an earlier post. Nowadays, when it is a little cool in an air-conditioned  mall and I am away from my house without a jersey, then I respond by believing it's going to get colder. Partial discomfort and low stress is triggered. I have to remind myself that I am okay, that all is well and that I do not need the jersey.

Another example of a trigger indoors is having my walking path blocked by dark coloured objects, such as a pile of socks or plastic bags on the floor. I have the uncomfortable feeling that such objects - although insignificant in size - are going to make me trip and fall. These are insignificant images in my peripheral vision but prompt low levels of irritation that develop anxiety in me. The triggers are becoming more prominent in my daily life as is my constant reflection. 

The laser treatment that I have been undergoing since May 2020 is an attempt to energise my body's internal communication system and remind it of my pre-dopamine depletion period. That would be the equivalent of kickstarting processes driven by the tree's original, underground root system before creating the need for the aboveground roots. 

Whither laser therapy

In order to reinforce the therapy and to reverse my "new normal" described earlier, I have had to to constantly speak to my barely existent movements so they are reminded to respond. I believe my brain has been kickstarted but because of my physical unfitness, there is a lot I have to do in order to allow body and mind to talk to each other. Based on a reminder from my brother (thanks, S!), I have started online Tai Chi again. The dialogue absent between body and mind during the dark days of PD and pre-laser therapy, needs to be regenerated. 

An example of such regeneration would be the "corrective messaging" described in an earlier post. When walking, I would have to remind my right heel to move before my toes so that my right foot stops dragging on the floor. The silent reminder, if you remember, would be "right-heel two-three toe-two-three, left-heel two-three toe-two-three".

I have just completed my 17th session of laser therapy and there are growing glimmers of hope. It's up to me to fight the good fight...till next time. 

 

   

Covid19 safety and vaccines

Will power and "ME" (Ari vs Intruder)

(14) PBM & PD: more questions than answers?

What is "normal"?

What does the word "normal" mean to me? Well, I have three responses. Is it to be a man in his late sixties and (i) to ignore the onset of my Parkinson's Disease (PD), (ii) to acknowledge I have PD and am sensibly medicated or (iii) to acknowledge I have PD and (actively or stupidly) engage in finding drug-free alternatives to the disease? I am reminded of a song by Johnny Nash: 

There are more questions than answers
Pictures in my mind that will not show
There are more questions than answers
And the more I find out the less I know
Yeah, the more I find out the less I know...

So, "There are more questions than answers"! 

Is drug-free PD realistic?

Would it be realistic to accept (i), (ii) or (iii) above? The first response is unrealistic as, when possible,  I've generally sought alternative remedies for any ailments. The second bothers me as I would not know how to deal with those periods between the drug wearing off and waiting for the next dose (this is second hand information). And I say this with great admiration for all those who are parkinsed and are taking medication. So, I need to justify my current approach, namely, a drug-free approach to PD. 

I have been thinking a lot about approach (ii) and opting for medication over the past month as I have moved from thrice-weekly to weekly doses of laser or near-infrared (NIR) therapy. The weekly doses are great for a few days but then appear to wear off, I imagine in the same way the medication is reported to "wear off" in some who are parkinsed. I completed a total of 14 sessions of therapy between 03 May and 03 August 2020. That includes the initial 10 sessions over three weeks (May), followed by the mandatory month-long break (June) and now weekly maintenance sessions (started July). To date I have had four weekly sessions. 

Sadly, my tremors have worsened. It is reasonable to assume that the increased tremor is the natural progression of being parkinsed since 2013 (remember "I'm all shook up" 😀). But worse still was the difficulty in maintaining a daily exercise routine. By the way, exercise for PD includes standing for long periods, sweeping, walking up and down stairs, stretching in the shower, etc. Consequently, I have been thinking about PD medication. 

The picture below, taken at a Gauteng bird park, illustrates my quandary. Do I continue to follow my heart and eat later like the pelican in the top-right corner, or do I want to be one of the crowd and eat now, like all the others?          

Is PBM worth it?

My non-committal answer to photobiomodulation (PBM) is: "Maybe. Maybe not." That is always a useful contradictory response when one is in a quandary. 

In the last post, number 13, I drew attention to seven contrasting factors surrounding my NIR (aka PBM) therapy. Today, after my 14th therapy session I am on top of the world and feeling like the old "me", feeling clear-headed, feeling confident and feeling positive. This is a Go Ari time of the month! 

In the last post, I also drew attention to the 'apparent separation between the mind and the muscles', and there's the disjuncture. I have been spending a lot of positive energy on pre- and post-PBM/NIR because I need to make sense of my decision (thanks O.M. in Durban for a heads-up on the Carte Blanche documentary). It is so much easier to experience the therapy as someone else is doing it for me. There is  no doubt in my mind that the "intruder" inside me will get stronger but I would like to think that this therapy is allowing me to deal more effectively with this eventuality. However, I need to maintain the Biokinetics routine together with the therapy. Simple, really, to address the disjuncture but easier said than done. There is no group to help motivate me as I had in the Dance for Parkinson's classes in Gauteng. It's just me, myself and I. 

If I am able to balance the amount of energy spent on both the mind and the muscles then this PBM/NIR adventure should be worthwhile. 

A way forward

I need to stay with the programme and address the notion of a 'disjuncture' above. Creating a balance between the agility of my mind and the flexibility of my muscles is critical in order to merge the two functions again. August is the month of my revisiting this disjuncture so I may return to the august company of my mind and my muscles. Eish! 

Till next time, stay safe. 

(13) Photobiomodulation: reflecting on impact

Recap :-)

I am back at the Durban Neuro Laser Clinic for weekly follow-up therapy of photobiomodulation (PBM) wearing the pad on my head, not unlike a cap: hence this sub-heading...

The initial phase of intense therapy was over three weeks in May followed by a mandatory one-month break (during which we drove from KZN to Gauteng and back - more about that later). I am now in a follow-up phase of PBM and so-called maintenance of what I was exposed to in May. This new weekly procedure started on 09 July. But first, dear reader, let me distract you.

Unfit for purpose

My wife and I needed to drive to Pretoria during June. In order to do so we needed a raft of documents before the KZN police granted a permit for inter-provincial travel. Unfortunately, the drive from Durban up to Pretoria on 18 June was sheer torture for my shoulders and arms. We made frequent stops to stretch and eat. Obviously, I had not been exercising enough. When we reached Pretoria I was in a sorry state. I had last undertaken a long distance drive on 19 March, pre-lockdown, from Pretoria to Durban. However, it included a stop in the Drakensberg where we met our children. Naturally, seeing the grandchildren was a distraction from my Parkinson's Disease (PD).

Impact and effects

I'd love to wax lyrical regarding the positive effects of the PBM therapy on my PD but it's too early to tell. My sense of impact is reflected in the picture above (Drakensberg, 24 March 2020): it is dark but there is a glimmer of light in the background! I'd like to reverse that but how can I? In keeping with my transparency, here's a brief summary of the past few months. 

The effect of the PBM therapy may be likened to - if not confused with - simultaneously taking medication and a placebo: my belief in the treatment is strong so any effects may be attributed to the impact of the treatment itself. There are seven effects worth noting. 

  

DURING PBM THERAPY (period: 05-29 May, 2020)  

(i) I experienced a sense of my brain coming online again - it was the old "me".
(ii) The resting tremors subsided during therapy.

(iii) My right hand dominance returned from time to time, a pleasant surprise. 

(iv) My right leg was less "leaden" and more responsive.

(v) I stopped using a walking stick to walk (300 steps) from the car to the neurologist's rooms.
(vi) I often slept through the night.

(vii) (👍  I was more confident and more active.)

AFTER PBM THERAPY (period: 30 May to 08 July 2020)

(i) I feel I am in charge of my thinking again - there's more "me" and less "intruder". 

(ii) The resting tremors are worse and occasionally more intense.

(iii) I continue to experience deteriorating muscle coordination, especially my right side.
(iv) When I walk I have started to drag my right foot as I did before therapy.
(v) I have become more reliant on my walking stick.
(vi) Seldom do I sleep through the night.
(vii) (👎  I have assumed the PBM would lessen the effects of PD so I've not been exercising.)

Some reasonable assumptions

I have observed a distinction between the response of my mental state and my physical state to the therapy. There is an apparent separation between the mind and the muscles. Naturally, I trawled the internet and besides the many articles on this connection, there is a recent (and expensive) book by Mitrofanis that appears to unpack this in the context of PD. I will invest in "Run in the light" sometime.

The "intruder" has been encouraging me to rely on the therapy and to ignore daily stretching and walking. I have also stopped doing the online Dance for PD sessions that gave me much pleasure and confidence. So, dear reader, back to the drawing board for me. Till next time.

(12) SHORT PD BREAK...

(12)  PD BREAK

Dear Reader
I will be away and without access to the internet till early July when I'll do my next post and share PBM insights - till next time, stay safe.
Ari

(11) PD and PBM

NB I am sukkeling to sort the comments section 😒  - if you want to comment, then please sms me at 079 5085170 or email ari.naidoo@gmail.com

Lockdown reward

After I was diagnosed with Parkinson's Disease (PD) in 2013 my life became increasingly constrained, both psychologically and physically. While I occasionally justified an "off" day using my age, unfit state or hypertension, this was not realistic. So, in February 2020, I contacted the neurologist who featured in a December 2019 Carte Blanche documentary mentioned in my last post. The earliest appointment at the Durban Neurolaser Clinic was mid-June 2020. 

I was told by the receptionist that an initial assessment by the neurologist would be followed by a series of roughly one-hour laser therapy sessions. However, as the Coronavirus lockdown period resulted in his many patients not being able to travel to KwaZulu-Natal, I was able to secure an earlier assessment followed by the initial phase of therapy. (His busy schedule indicated public interest in the approach.) The neurologist explained that I would need to complete a series of ten carefully spaced treatments and then take a months' break. 

What I noted from that first assessment interview was that it would be up to me, as the patient, to do the pre- and post-treatment assessments. These comprised physical tests of gait (walking) and fine motor skills (finger and hand actions) using videoclips. I decided to add writing, typing and hand dominance. As a practitioner researcher - this was described in an earlier post - his "subjective" evidence approach suited me: I would have to evaluate what was happening to me.

Simply red, in black and white

As a result of our being in stage 4 of the lockdown period during my therapy, the Durban Neurolaser Clinic sent me a permit to travel and as their rooms are at a hospital, I felt relatively safe going there. I was instructed to wear a mask and to bring gloves. There were stringent precautions at the hospital entrance before entry with two staff recording each patient's details, body temperatures and sanitising before allowing entry. Every one of the members of staff inside the clinic wore full personal protective equipment (PPE), consisting of a white onesie, white booties, white masks and white goggles. "Area 51" often crossed my mind and made me smile.

For the first week of therapy, besides working out gender, I had no idea of who was assisting me as they all looked singularly similar except for their height. This was a tad confusing as I was making notes after each therapy session regarding what exactly occurred, who did what and how. All I was aware of was four voices, accompanying accents and their varied approaches to initiating therapy. For obvious reasons, I had opted not to wear my hearing aid, which made things doubly difficult.   

Photobiomodulation

The primary treatment apparatus consisted of being exposed to a flexible pad, about 30 cm long and 10 cm wide (as shown above) while the secondary treatment apparatus consisted of tracing by two laser probes, one red and one black. During the secondary treatment, I had to wear special dark glasses. 

The primary pad contained a combination of super luminous red and low level Infrared diodes combined into a single diode. This pad was placed on various parts of my cranium, base of the skull and once on my stomach. During each day's treatment, the pad was used in three different areas for about 12 minutes each, depending on the programme. That was followed by about 10 minutes of the two hand-held lasers (manipulated by "Area 51" staff) meticulously tracing patterns around the front, top and back of my skull.  

The total treatment time for PD - thrice with the pad and twice with the red and the black probes - depending on the programme, was just under an hour per day for ten days. The recommendation was for the first five therapies on consecutive days and the remaining five on alternating days.  

From what I have read, the function of the diodes is for light energy to penetrate the skull through the radiation so it may be absorbed by cells' membranes. The resulting complex reactions are physiological in nature. Seeing that the blood vessels are dilated during treatment I always felt warm during therapy. In the 10th post, I cited an excerpt from an article regarding scepticism in the field of photobiomodulation (PBM) that, hopefully, piqued your curiosity. I will not attempt to further fine-tune what occurs. If you're interested, then do use Google or Safari or Duckduckgo or other search engines, dear reader.

Next time I'll share what I feel like after the first couple of weeks of PBM for PD.   

(10) PD, no lights, no action

Seven years' dark days

Since my diagnosis in 2013, I have avoided taking any Parkinson's Disease (PD) medication, a decision reinforced after viewing the movie "Awakenings" and the GDNF trial documentary, both of which have been reviewed in earlier posts. In both instances, I was made to understand that little can be done to reverse PD, neither by (a) PD medication nor by (b) invasive surgery. Hence, it was reasonable to assume that an alternative approach that does not include (a) or (b) - for which there is anecdotal evidence, but few large-scale clinical trials - would be an avenue to investigate. The Australian trial stopped data collection in 2019 and I hope their results will be published soon.   

When I decided to trust in the power of the original me to cope with darkening days, what I could not foresee was the force with which my body and mind was to be hijacked by the intruder. This takeover has been especially noticeable in the shift in my hand dominance and becoming more of a threat than I thought it would be. One of my few remaining pleasures, driving our car, has gradually also become a challenge. I might have to stop long distance road trips by 2021, because of worsening motor control (excuse the pun!). So, what now? 

Observations made by Palfreman (2013) (the L-dopa Conundrum appeared in an earlier post) regarding motor complications (MCs) are significant. An important one is that the presence of some MCs and possible side-effects on patients taking PD medication result in their having a few "off" days per week, when MC's prevail and symptoms can worsen. This is offset by having symptom-free "on" days. As a parkinsed person, I also have "on" and"off" days, but, without chemical dependency. 
 

Some light

In December 2019, M-Net's Carte Blanche broadcast a documentary regarding the use of low-level Infrared (or near Infrared) light to treat those with PD. The ten minute programme described therapy that was not invasive, caused no physical damage to the brain and was available in South Africa! I will describe aspects of the treatment that, hopefully, will make sense.

According to the Durban Neurolaser Clinic laser therapy is "the use of light from a Low Intensity Laser Diode or an array of Superluminous Diodes to eliminate pain, accelerate healing and decrease inflammation...[and is] also known as...low intensity laser therapy or photobiomodulation therapy." The clinic also treats neurological conditions, such as PD. Naturally, I was curious about this therapy, so I did some online research, and found pros and cons.

Photobiomodulation therapy for PD

The general scepticism of photobiomodulation expressed by medical experts (including some of my own parkinsed friends who subscribe to drug therapy) relate to the absence of clinical trials and accompanying evidence. As one who has been parkinsed and who is not a medical doctor, again, I assume that the pharmaceutical industry and medical science would be sceptical of any PD therapy where no drug is present to address the problem. 

According to Hamilton, et al. transcranial photobiomodulation therapy yielded positive results on PD patients and their tremors, gait and writing. There was significant improvement in most patients in their sample. These writers' view of medical scepticism regarding photobiomodulation is based on their belief that "the concept of light inducing chemical and metabolic change in neurones appears difficult to accept by some colleagues, although they have no trouble accepting the concept that a drug can induce a change..." (Hamilton, et al. page 1739).  

Should I consider transcranial photobiomodulation therapy? More about this next time, dear reader.

        

(9) Another PD bond: shaken and stirred.

"Words, words, words."

The above response of Hamlet to Polonius has been ringing in my ears for years (I have tinnitus too) but let's contextualise this before continuing with my Parkinson's Disease (PD) story. 

I believe I am a wordsmith. For example, after a 2014 road trip from Gauteng to the Northern Cape to see the Namakwaland daisies in their magnificence, our journey included 160km of gravel road between Calvinia and Sutherland: a tiring, two hour trip! When I returned to Gauteng and started writing our daisies trip story, I created the word "gravelling", combining long distance "travelling" with "gravel". The Oxford Dictionary office responded to my email query about this word, stating it had not been used in that context before. Naturally, I was chuffed. In this post I introduce "trevers", combining "tremors" with "shivers" in the PD context. 

While there is a distinction between essential tremors (ET) that often occur with ageing and resting tremors as a result of PD, the product of each is similar: tremors that are debilitating and draw attention. There is also primary dystonia, that generally leads to repetitive turning or twisting movements in body posture: it presents as an abnormality similar to but is not PD. In addition, I sometimes have mild tremors followed by sweating which is the result of low blood sugar.

I used to cope well with cold weather in Gauteng until the arrival of my PD. Since 2018, I have spent winters at the KwaZulu-Natal coast where it is warmer than Gauteng and my tremors do not morph into 'trevers'. Naturally, going to the Drakensberg region at any time of the year can trigger bouts of 'trevers'. Tremors and shivers tend to be sympathetic and the result is that 'trevers' can be more intense and less controllable than resting tremors. 

"I'm all shook up, Mm mmm oh..."

The challenge for me as a parkinsed person is my tremors draw attention to my abnormality. It is almost like left-handedness but more conspicuous. I have seen motorists and cyclists staring at me bumbling across pedestrian crossings in Gauteng, on the rare occasions when I have walked to a shop. Not confident, unfit, stooped and rigid, their stares made me more self-conscious. Even my claim of being a wordsmith could not rescue me when crossing a road. So, all I can do in such a situation is to keep moving and to start a song in my head. One that provides a constructive distraction was recorded by Elvis Presley and called "All shook up". It is a quirky way of coping, and most of the second verse lyrics are appropriate:

"My hands are shaky and my knees are weak 

I can't seem to stand on my own two feet
Who do you thank when you have such luck?
I'm in love
I'm all shook up
Mm mm oh, oh, yeah, yeah!"

Observation, tips and tricks

My resting tremors manifest as a visible activity under my skin. I can actually see it in my limbs when I am still, I can see a resting tremor being generated. It occurs just below the skin and looks like a continuous wave-like action. If unchecked, I believe my muscle memory would increase the intensity of such a repetitive 'shaky' action into a 'new normal' action mentioned in an earlier post. This is concrete evidence of the intruder having hijacked my system.

When it is very cold, my body needs to constantly contract and relax my muscles resulting in shivers that produce heat. The whole body shivers visibly. 'Trevers' represent the combined presence of shivers and tremors. As both activities are similar, in my opinion, they feed off one another, almost forming a symbiotic relationship. I have observed that the shivers across my whole body gradually disappear as I warm up, while the tremors in my limbs remain for a longer period. 

TIPS FOR ME: Identify and eliminate triggers caused by unfamiliar environments. For instance, meeting doctors for the first time, standing in queues, watching horror movies, etc. Such events create tension leading to tremors in my limbs. (1) For relief when seated, I do repeated shoulder hunches as far forward and as far backward as possible. Then, I raise my feet off the ground to knee height, or constantly cross one foot over the other to ease the tension. (2) If I am standing, then I constantly shift all my weight from one leg to the other. This is easier with a walking stick. (3) Merely holding or touching a small stress ball in the palm of my hand without squeezing it, gradually eases my tension and reduces the intensity of my tremors. 

Next time I will share my thoughts on photobiomodulation therapy, also known as low-level laser therapy. 

(8) PD & dexterity: go left, right?

Why is it right?

QUESTION: Does my right hand know what my left hand is doing? ANSWERS: (i)Yes. (ii)I suppose so. (iii)Maybe. So, what about dexterity?

The Latin word sinistere refers to "left"or "improper". In English sinister means something "evil". When considering hand dominance, there's also mixed-handedness (where one can play sport with the left hand but write with the right hand) which leads to the notion of dexterity. But, let's return to the matter at hand, namely, how Parkinson's Disease (PD) hijacked my dexterity! A geneticist or neurologist could shed light on prevailing theories on hand dominance.

At varsity, a student in class had an accident just before exams. She fractured her right hand, her writing hand. She sat for exams a few weeks later but wrote with her left hand. She was the very first ambidextrous person I had come across and I was impressed. However, there was a time when she would have been discouraged from doing so because of the "sinistere" stigma.
 
I was born right-handed. At high school, StephenF and RenukaV, both of whom were left handed, always gave me a run for my money when we played table tennis. As a right-handed player I had to be shrewd as a ball returned by a left-hander would spin differently. I had to be observant. Fast-forward to 2016 and I noticed something else regarding dexterity and hand dominance.

PD & shifts in dominance

Sometime during 2016, I observed that my right side was struggling, so that my right hand and leg actions were less fluent. At the time I did not consider PD tests, including a dexterity test, such as the simultaneous tapping of the thumb and forefinger. Currently, I am only able to sustain such a tapping movement, at regular and increasing speed, with the left hand. My right hand is able to start the tapping, but, after a few seconds, the action falters and stops.

A good idea for parkinsed people is for a social worker to assess their level of independence. If you have not done so, then please consider the possibility. I did so a few months ago and wondered why I had not done so earlier. I was probably in Egypt, in denial (pun...).    

I have observed hijacked dexterity when washing pots, plates, dishes and cutlery. For the past few years I have used my right hand to hold items to be soaped and the left to hold the soaped sponge. However, pre-PD, I used to hold items to be washed in my left hand while soaping them with a sponge in the right. With the advent of my PD, it has been deemed necessary by the command centre - my brain and other systems - that my hand dominance should be shifted, probably to make more efficient use of the remaining systems.

Another example of hand dominance shift is my driving a vehicle with automatic transmission. My wife observed a few years ago that my right hand had gradually become passive and often rested on my right thigh while the left hand controlled the steering wheel. One-handed driving is an unsafe technique especially long distance. Putting on a shirt provides another challenge: first I put my left arm into the left sleeve followed by a gargantuan struggle for the right shoulder and arm to get into the right sleeve. By 2019 my wife needed to help me get my arms into sleeves. 

PD doesn't have to cost an arm & a leg 

The onset of PD and increase of right side involuntary tremors has meant that tremors in my right leg and arm have also increased in intensity. This has also meant that my right side coordination and muscle activity has also started to decrease, leading to loss in muscle tone and strength. I believe this has also resulted in a generally painful right shoulder and upper right arm. I was aware of the onset of Bradykinesia but not of the shift in dominance.          

I discovered recently that my sore shoulder could be sorted through Biokinetics or regularly attending Dance for Parkinson's sessions. During my search for drug-free remedies I came across Sensoria's work on smart socks that also attracted the Michael J. Fox Foundation to sponsor their clinical trial. The idea of smart socks telling one to lift up heels or toes led me to a simpler option, namely, wrist weights on either wrists or ankles. They did not cost me an arm and a leg and work 70% of the time.

TIP FOR ME: I realised that when walking, the PD hijacking of my internal communications had resulted in me dragging my right foot. One remedy was spending a few thousand rand on Sensoria socks while another would be to wear a wrist weight. Wearing such a weight on either my right foot or leg on alternating days of the week is a physical reminder for me to lift up my right foot or to swing my right arm when walking. This is done in conjunction with corrective messaging described in a previous post. This works quite well most of the time. These weights are not allowed aboard a plane but may be in one's stowed luggage. Wearing my watch on my left wrist also reminds me to swing my arm but is less effective because it is lighter in weight.       

With apologies to Beyoncé 

TIP FOR ME: to the right! American singer Beyoncé Knowles has a song called Irreplaceable, the introduction to which has the now popular phrase: "To the left, to the left: everything you own in a box to the left". During the past two years one of my dexterity corrective messages when washing dishes has been: "To the right, to the right...". However, I have discovered that reliance on corrective messaging is not always effective, so I wash with left dominance and rinse with right dominance. Also, during rinsing I ensure that my right hip is forward and closer to the sink than the left one. 

When driving I use the corrective message "both hands on the wheel" when I notice any one handed driving. So far that has helped. 

Till next time when I'll share my thoughts on why typing and the cold weather may be a challenge for parkinsed people.   

(7) Balance and PD

The balance  

I've had a few memorable falls since being diagnosed with Parkinson's Disease (PD). Each is 'memorable' because I have a vivid recollection of them and each has helped me figure out what to avoid in the future. One fall was when we were camping (I stumbled backwards and bent a tent pole), another in our bathroom (I stumbled backwards into the shower), a third was embarrassing and at OR Tambo airport (I tripped and fell in international arrivals), one in a Durban mall (I tripped on the stairs) and the sixth was in a packed Port Elizabeth restaurant. Each fall is a reminder of my dis-coordinated self. (Do Victoria or Niagara have PD?) 

Getting up and off a chair in a confined space is one of my challenges, because I am struggling to perform three actions simultaneously. First I have to stand up, next push a chair backwards, then balance in a semi-standing position while slowly walking backwards as I move away from the table. When a table cloth obscures the position of a table leg, then that can catch my foot and cause me to stumble backwards. This is why I fell backwards in a busy Port Elizabeth restaurant. Luckily, as I move slowly, a patron sitting behind me predicted what was about to happen and caught me before I hit the concrete floor. Phew! 

   

When I start a backwards movement - either consciously or not - I believe PD has made it difficult for me to control the momentum, so I keep going backwards. Hence, walking or stumbling backwards, often leads to my falling over or onto something I am unable to see or may have forgotten is there. It feels like an animated version of me falling in slow motion, with the 'other me' observing with amusement. So, I avoid walking backwards.

TIP FOR ME: besides doing a thorough check of my environment, I have discovered that to stand up from a chair, it helps if I first look at a spot (more of this "spotting" action below) in front of me, at eye level, before telling myself to straighten both knees. Then, when I stand, the result is a fairly smooth action where I can stand up, confidently balanced, while sliding the chair backwards. Naturally, it also helps when the floor has a smooth surface. Outdoor seating on a beautiful gravel surface is terrible for a parkinsed person!

However, falling on stairs - either ascending or descending - is likely due to poor concentration and little to do with PD.

Train spotting

A long time ago I was a modern dance instructor. A cool strategy for introducing a dance turn - also known as a pirouette - was to teach students spotting during their training. When attempting a quick turn, one's body tends to be unfocused and wobbly at the end of a 360 degree turn. Initially, it can also lead to dizziness. To correct this, one should focus on a spot at eye level on a wall, or focus on a person in front of you. One's head should whip around slightly before the body does. After the 360 degree turn, the head and the eyes must return to fixate on the same person or spot on the wall. Then, the whole turn is less wobbly and one should not be dizzy. I have found a different reason to train myself to use eye focus.

One of my many frustrations is dressing, specifically, putting on shorts or underwear, as I need to be seated at the edge of the bed in order to very slowly angle my foot inside the pants' leg. I was unable to do this from a standing position - unless I was leaning against a wall - as I tended to fall over. Then I tried part of a spotting procedure. Holding the shorts in front of me while standing, I focus on a spot either on the wall in front of me or on the floor.

TIP FOR ME: when dressing, I have discovered that if I stare at a spot, I am able to raise one leg and can balance fairly safely and confidently, in order to put one foot into the shorts without staggering or falling over. I follow the same procedure to get my feet into sandals or shoes from a standing position. I have noted with interest that even getting up from a chair or the bed - as described above - is easier and I am more confident when I stare at a spot in front of me.

PD & predictability 

Seven years ago, if someone had asked me to predict the future, I would never had thought about a virus causing a pandemic resulting in a lockdown, or about the Aeromobil being exhibited at a car show. The same applies to my being parkinsed and how I would cope without taking PD meds. A large part of the impact, mentioned in an earlier post, is how this intruder has hijacked my body and systematically eroded my confidence. PD stages and symptoms are generally similar but the impact of chronic PD meds on individuals is not predictable. Like the GDNF trials or Levi-dopa in the movie Awakenings in earlier posts, different PD meds appear to have different results on different people. 

Composing these posts on Blogger has been a confidence booster. I also rejoined FaceBook after a two year absence. But underlying the posts is the biggest confidence boost of all: I am gradually learning how to use both my left and my right hands to type. All my life I have been right-handed, until five years ago when I slowly became left-hand dominant. I will return to this in the next post.       

(6) PD, muscle memory & a new normal

Muscle memory and muscle forgetory

In my last post I shared some thoughts about the likelihood of lowered dopamine resulting in 'unclear messaging' in my body. Losing some of my muscle memory - I like to call it my muscle 'forgetory' - has probably led to my poor coordination and 'bumbling gait'.  

In keeping with the notion of my being a practitioner researcher, described in detail in an earlier post, I decided to examine what was happening to me, how it has impacted and what remedial procedure might be applied. 

Let's start with getting dressed, specifically, putting on sandals. While this procedure might be banal for those without Parkinson's Disease (PD), it is likely to represent one of the many frustrations experienced by those who have been parkinsed. 

An Aha moment 

Nowadays, I seldom wear shoes as I struggle to slip them on before tying the laces. On the rare occasion when I do wear shoes, I have to use a shoe horn to get them on. Otherwise, for a retiree, a good pair of sandals are a great substitute. By 'good' I mean well structured sandals with good support from heel to toe, as I have flat feet. Also important, is the rear design of the sandals as I wear customised orthotics that should not slip out while I am walking. 

Bearing in mind that in 2013, the PD started on my right side, the right limbs are generally under utilised. My right arm and leg, generally, are less mobile than those on the left side. In the morning, my sandals are generally on the floor where I would have left them the previous night. Points, 1. and 2. represent the original process while the last two describe what is current. 

1. Leaning against the wall or holding onto something, I would first balance on the left leg, then point the right foot in the direction of the back of the sandal before quickly sliding my right foot in. PROBLEM: for the past few years, my right foot would go into a slow motion movement, then freeze, so I would be unable to slide my right foot into the sandal. I started to accept the action as normal as I had been parkinsed. 
2. During the 'freeze' action that would last up to twenty seconds, I would become irritated and the resulting frustration would reinforce the inaction and freezing. PROBLEM: I started to be concerned that, after regular occurrences, the slow motion action would be reinforced and then stored as the new normal during any attempt to wear sandals. Also, the action would gradually slow down to a freeze! What then? 
3. One morning, out of sheer frustration, I shut my eyes, then cursed, and slid my right foot slowly into the right sandal, and it went in without freezing! Yay! PROBLEM: for my foot to slide into the sandal while my eyes were closed, I had to be leaning against or holding onto something. I know it wasn't, but it felt as if it were a brand new action and I felt so confident. Later, I discovered that I could comfortably slip on my sandals while seated or standing while holding onto something, and keeping my eyes closed.
4. CONCLUSION: I needed to test the action of closing my eyes when dressing with other similar actions to test my new theory. CONCLUSION: Closing my eyes appears first to redirect then to remodel a previous normal memory, i.e. pre-PD, stored for such an action. Consequently, I had modified an existing action into a new normal, i.e. a during-PD memory, for wearing footwear. 

Discovery: I must close in order to open

My sense of points 3. and 4. above, is that my muscle memory appears to be guided, as well as triggered, by what my eyes are looking at during the start of a specific action. If I need to wear sandals, looking at a sandal or a shoe and then my foot, seems to trigger a muscle memory response (A), what may be regarded as the 'previous normal'. 

However, the PD has resulted in unclear or absent messaging, so response (A) has deteriorated to a slowed response (a). As (a) is unacceptable to me in my PD drug-free state, I hunted for and, serendipitously, found a corrective action, response (A+). During the (A+) action, I am performing an action familiar to my body's systems, but with my eyes physically closed. With regular practice, (A+) with any limbs, is slowly becoming my 'new normal'. I had to close my eyes in order to open my mind to new possibilities. I had to modify an existing function in order to reroute it.      

Closing my eyes in order to open my mind appears to allow me to modify a once familiar action from the 'previous normal' to the 'new normal'. It also works for me in other similar situations, where I need to get a limb through a narrow opening. Other examples would be getting my feet into shoes, or pushing my arms through both long and short shirt sleeves. It works so much better when I close my eyes. And this modification does not require me to hunt for any neurological theory to back it up: it works for me! 

Next, I will share what I have discovered how to improve certain balance actions. 

  

(5) PD, my theory & my corrective messaging

Name & tame 

Parkinsons's Disease (PD) is a 'progressive disease of the nervous system'. It is 'neurodegenerative' and arises as a result of 'a dopamine deficiency'. The jargon does not help me understand why, as a parkinsed person, I struggle to stand, to walk, to put on underwear or footwear, or to eat. Actually, it is just a miserable movement disorder.

Let's put this struggle into context. As a baby I learnt to roll over from my back onto my tummy and back, then to crawl and finally to stand unsteadily before attempting to walk. Such actions would have required a good sense of balance. All of this was positively reinforced: physically through my repetition and emotionally by my parents and others. Gradually, my muscles would have remembered what to do in order to complete these actions. It is likely that as a new walker, my age, weight and capability would have been key calculations that needed to be stored as some form of memory.

Similarly, as an active adult who gyms, jogs or is part of amateur team sport, I would need regular practice to stay fit and competitive in order to gradually improve. If I were injured or went on an extended work-related trip, such regular practice would lapse. Consequently, I would have become unfit but, once healed or back at work and old routines, I should have been able to return to previous levels of fitness. Here, the notion of muscle memory would have been a critical part of my fitness and recovery plan.

So, what happens to parkinsed people? Why can't my muscle memory save the day?

My PD theory 

It is reasonable to assume that lowered dopamine levels have led to my bumbling gait, loss of coordination and poor balance. Dopamine is the so-called 'messenger molecule' actively assisting in my body's general communications, feeding into and supporting the nervous system. So, my lowered dopamine levels have led to unclear messaging or even its absence. Years ago, computer programmers would have called this garbage-in-garbage-out: I'm unable to walk as I used to because my body and infrastructure cannot apply corrective measures, hence the bumbling gait!

Nowadays, my nervous system recognises my bumbling walk as my normal walk. My poor sense of balance, especially when going from a seated to a standing position, attempting to walk backwards or walking forward in cluttered spaces, has also become normal. And without corrective messages from my nervous system, I believe this data is stored in my muscle memory as the new normal. 

As a PD drug-free person, I assume that the range of PD prescription drugs available will attempt to regenerate such messaging in the body of one who has been parkinsed.

Some rehabilitation

In the past two years I have attempted to correct my awkward walk by speaking silently to myself regarding a step by step (pun intended) procedure. It started with my repeating "right-heel two-three toe-two-three, left-heel two-three toe-two-three" when I started to use a walking stick in my left hand. (I am using a collapsible, camera monopod that doubles as a walking stick: a tip from a buddy in Bali.) It is important to note that I first had to see my abnormal walking, in order to reintroduce the mechanics of my walking differently.

This process was assisted first by my counting to develop a rhythm and then by silently humming a waltz tune in order to sustain my "new" walk. Fortunately, I often have tunes playing in my head, so this has been easy. I guess this procedure simulated a kind of rehabilitation in the form of corrective messaging. In confined spaces, which is most of the inside of our flat, I still walk by dragging my right foot. However, when there's some space, for instance down the passage leading to the front door, I walk as a retiree. Shopping malls, while tiring, offer the perfect straight-line spaces.   

Also, I have observed that my Biokinetics regime is a hundred percent better with the appropriate equipment and under personal supervision, compared to doing it on my own at home. There is a strong need for emotional reinforcement, like I probably received as a baby trying to stand, balance and walk. 

Next I'll analyse then unpack my tips and tricks for dressing and for balance. Till next time and the next post, dear reader.

(4) PD clinical trial of GDNF

REVIEW: The GDNF trial

The BBC documentary entitled The Parkinson's Drug Trial: A Miracle Cure?, a two-part series, captures what a group of parkinsed people in the UK endure to be cured of their Parkinson's Disease (PD). The GDNF trial documents the invasive surgery in all its goriness. I have a copy of the complete documentary on my PVR, but have been unable to locate it again, bar online snippets.

In 2013, neurologist and chief investigator in the GDNF trial, Dr Allan Whone, acknowledged that in the field of PD research they had "good symptom improving therapies that work for some of the people some of the time...". Again, this further reinforces the notion of the 'conundrum' in the L-dopa Conundrum article referred to in my previous post. Around 2017, Dr Whone and the team proceeded with the GDNF trial involving 41 volunteers undergoing GDNF infusion.

GDNF, an abbreviation of glial cell line-derived neurotropic factor, is a protein produced in the brain and promotes the growth of brain cells including those lost as a result of PD. The GDNF, discovered in the 1950's and first trialed in the 1990's, would be introduced via tiny, catheter-like mechanisms surgically inserted into the brain and then accessed via an external port drilled into the skull. The monthly infusions of either GDNF or placebo would be via this port into the volunteers' surgical implants that, over a two-day period, would be dispensed to the appropriate area inside the brain.

In 2019 Dr Whone (open link and scroll down for his YouTube lecture) presented the procedure as well as the results of the trial. Unfortunately, volunteers' results (this site also has a link to the Journal article) of the clinical trial had fallen below the required threshold. As this had not complied with what had been scientifically determined, the trial was to be discontinued. Consequently, the pharmaceutics company withdrew its support, much to the immense disappointment of the volunteers. It is interesting to note that the trial result images also showed that GDNF, with varying degrees of significance, appeared to have revived brain cells damaged by PD. Sadly, this form of evidence was insufficient for that trial to have continued.

Reflection

The reality check for a viewer who has not been parkinsed is the impact of the documentary's in-depth recording of the lives of a small sample of the 41 volunteers. The documentary goes a long way to bridging the gaps between merely reading about PD and actually seeing its debilitations manifest in real life. One bears witness, first-hand, to what the intruder is capable of doing when allowed.

There were times that I cringed, seeing how parkinsed people were treated during the documentary. GDNF volunteers' levels of anxiety - visibly that of Tom Isaacs - appear to have been raised when in hospital rather than being lowered. Here, I refer to certain triggers for parkinsed people that exacerbate anxiety and accompanying tremors.

Both the movie Awakenings and The Parkinson's Drug Trial: A Miracle Cure? are depressing, real life accounts of experiments and possible cures. In both instances, one can conclude that medical science and pharmaceutics companies invest enormous amounts of time and resources to achieve their goals. This is especially cruel for the GDNF trial because one has to assume that all volunteers, seduced by the possibility of a cure for PD, will now spend the rest of their lives with these implants (I hope I'm mistaken here!).

Also one may deduce, in the case of PD, that science marches on in search of new funding, new collaboration and new journal articles. Sadly, in the centre of the GDNF trial are the brave 41 who pinned their future on hope and faith but will remain parkinsed: flotsam at the edge of the world of PD and science.

Next, I will examine how I started to adapt to my growing affliction. In the words of Peter Quince in Shakespeare's A Midsummer Night's Dream I should say: "Bless thee [Ari], thou art translated...".

          

(3) PD experiment in a movie

Me and PD

My life with Parkinson's Disease (PD) - and it is reasonable to assume that it applies to others - has both comic and serious undertones. It is not an elegantly crafted Shakespearian play but contains elements of a soap opera. 

Like a soapie, I have recurring status and play different roles. Some days I am Ari, fighting the effects of Bradykinesia. This term refers to my slowed movements, shuffling, dragging my right foot when walking, constant tremors, occasional rigidity and freezing of actions. When I see my reflection in a shop window or full length mirror, I resemble an actor attempting to mimic someone who's had a stroke. Also, I have been asked why I am angry because, of late, I often have little or no facial expression. 

Regarding the recurring status, on other days I am a parkinsed person wrestling for seven years with Ari and his damned alternative, drug-free approach to PD. This involves my practitioner-research approach to PD where I first observe a PD-related issue, then try to figure out a practical solution based on my experience and common sense before trawling the internet or probing medical research. One example would be how to deal with the freezing of movement when dressing, by examining the role of muscle memory and association: but more of that later. Let me describe two experiments which you might find interesting and informative.

REVIEW: AWAKENINGS, the movie   

I have come across two extreme examples of the unpredictable nature of PD. The first is Awakenings available on pay-TV channels, a memoir of neurologist and prolific author, Oliver Sacks, that was a book made into a movie in 1990 starring Robin Williams and Robert De Niro. The second is a BBC documentary  entitled The Parkinson's Drug Trial: A Miracle Cure? First let's look at the movie.

The movie Awakenings (1990) is about seemingly catatonic patients in a psychiatric hospital in New York. The patients are mostly victims of encephalytis lethargica, an epidemic that might have started sporadically across Europe during the early 1500s and was then identified and labelled in the early 1900s. This neurological syndrome presented itself in two phases, the latter clinical phase resembling PD, which may explain why a PD drug was used on the patients.

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 with a healthy regard for what is measurable and, consequently, what may be accepted as evidence.

What is evidence?

In his new job at the psychiatric hospital, Dr Sayer appears to turn a corner in his career. He starts to question the notion of evidence when, in an attempt to justify the need for L-dopa to be prescribed, he is reminded by his manager that the patients have been immobile for many years. Dr Sayer responds stating "...that people are alive inside...". The manager warns Dr Sayer not to expect the hospital to fund the L-dopa "trial" that would cost around $12,000 per month. However, hospital support staff, encouraged by his humane approach and his persistence, start donating small amounts of their own money for the "trial" to begin, which appears to put pressure on management. Hence, the manner in which evidence is gathered, structured and accepted, differs from fraternity to fraternity.

The L-dopa conundrum   

Unfortunately, once his patients take L-dopa it is obvious in the movie that Dr Sayer is unable to calculate a prescribed dosage required by each patient. It is interesting to note that in 2013, a journal article entitled The L-dopa Conundrum questions the presence of L-dopa and similar drugs by asking: "Should newly diagnosed patients delay taking L-dopa as long as possible or seize the day?" The question is being posed more than 50 years after the launch of the PD drug!

Next we'll examine the clinical trial and the use of GDNF and indulge in some reflection on both. 

      

       

(2) Parkinson's, mind games & "I"

The internet and mind games

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

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

        

Possible diagnosis and early symptoms 

In my case, I may have been parkinsed as a result of traumatic brain injury. When I was a child, during the 1950's, I fell out of a moving car. I was told later that I had spent a number of days in hospital before being discharged. Fast forward to 2008 and I spent a night in hospital because of an intense headache. In between there was another possible trigger: the death of our son in 1999. This is my attempt to stitch together a series of personal traumas that may have led, directly or indirectly, to the lowering of my dopamine levels and the resultant PD. 

During the 1990's I was a power walker but by 2011 I had difficulty with my co-ordination so I was forced to stop walking outdoors and on uneven surfaces. Around 2012 I noticed that my right leg would tremble whilst urinating when standing. I ignored it but my wife insisted I see our GP who recommended I see a neurologist. After having an MRI to eliminate other possibilities, the neurologist declared I had PD. From then I have been conscious of PD, an intruder, often masquerading as another "me". This other "me" is frequently responsible for mind games!   

Regardless of these events - the 1950's car incident, the death of our son and their possible unintended consequences - from 2017 I started to vegetate indoors. It has been disturbingly fascinating to be aware that often I would feel the need to exercise yet the other "me" would convince me to rest. I wish I knew where to get a restraining order on "him".

Go left, right?   

By 2016 I started to favour my left hand during household chores, when driving and even when typing. I have been consciously trying to reverse this as I am a naturally right-handed person. Yet another mind game to make my left side, that currently represents my more confident side, the dominant one.

I believe that as the PD started on my right side, the diminished use of my right arm, and by default the right shoulder, has led to the intense right shoulder pain that used to wake me at night. In 2018 I started having monthly physiotherapy for that right shoulder pain. While it was always pleasant, its effect was short-lived. In 2019 I found a rehabilitation centre offering the BIG programme. While the exercise programme is rooted in sound principles, it is quite expensive so in 2020 I sought an alternative, namely, Biokinetics. The customised regime appears to be effective for me, especially when exercising under supervision and using the right equipment, rather than at home on my own. 

Another useful and constructive activity is dance. In 2019 my wife came across a Dance for Parkinson's class and I joined it. Emanating from the USA, this is for those who are parkinsed as well as for their caregivers. The class I have been attending in Gauteng, South Africa, has a few dozen participants many of whom are on some form of medication. However, they are all competent participants who make the class a stimulating one. Most importantly, I have observed that I am unlikely to be woken by a sore shoulder during the night following a dance class or Biokinetics! 

In my next post, I will examine two examples of PD treatment. The one is from a 1990 movie, set in the USA and ostensibly about movement disorders. The other, is a 2018 documentary about a recent clinical trial in the UK. From the perspective of one who is parkinsed, I will provide a context and some reflection on both examples.