(62) Hindsight for Foresight (Phase 2)

PHASE 2 - REVISITING LIFE & PARKINSON'S

In Post 61 I wrote that I would spend the next three posts on "HINDSIGHT", regarding my new life with Parkinson's, continuing with events and revelations after my first diagnosis mid-2013. So, dear reader, let's proceed...

A medical diagnosis involving a patient and a medical specialist, is an event filled with many questions and some answers. Identifying the specific condition or disease relies - in my non-medical opinion (IMN-MO) - on the specialist's expertise and depth of understanding. This 'depth' is also based on how wide is the range of the specialist's knowledge. So, for example, I would assume that a Urologist would know a lot about the prostate gland and prostate cancer, but an Oncologist would have greater 'depth' and know what treatment would be the most appropriate in the field of prostate cancer. This view is IMN-MO!

Predicting what will happen to the patient and the disease or condition, namely, the prognosis, is also, IMN-MO, reliant on the range and the currency of the specialists' knowledge, especially in the case of Parkinson's Disease (PD).

I believe that when some Neurologists come across a case of PD, the inclination to offer a stock/ standard diagnosis is greater than their willingness to consider alternative diagnoses. One example is the diagnosis of actor Robin Williams in the USA. Robin's initial diagnosis indicated that he had PD but after his death by suicide in 2014, a post mortem requested by his wife showed that the actor actually had Lewy Body Dementia (LBD): an unfortunate diagnosis in a First-World country! Let's connect some dots...

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2013 🔎

In 2013 the diagnosis of my condition by Neurologist DrK (Gauteng Province - see EXCERPT below) was that I was a Person/s with Parkinson's (PwP) and I should be on an anti-Parkinson's drug regime. I was concerned about the side-effects and these drugs' unpredictability, based on published anecdotal evidence as well as research.

EXCERPT: POST 50 ✄✄✄ "...my wife and I entered his consulting rooms. He had a brief chat and then he asked me for the MRI images. I gave him the envelope and waited in anticipation. He spent a minute studying the scan then asked me to walk across the room and back to my seat. Then he observed:

1. The MRI scan was "clear", so he could rule out any other conditions, such as a tumor;
2. However, my walking action indicated that I had Parkinson's Disease (PD): I was dragging my right leg slightly, not swinging my right arm and PD could be the reason for my "leg tremor"; and
3. He prescribed chronic medication for my PD - I accepted the diagnosis but indicated my unwillingness to use the prescription, due to generally unpredictable side effects of PD drugs.

This Neurologist's instant diagnosis based on my walking was impressive and got me thinking. I was at the pinnacle of my career after 36 years in higher education...when challenges emerged, [I would always respond by considerations] based on the familiar (stuff I would have known for a long time) and with what I was comfortable (stuff that would not lead to confrontation)...".✄✄✄

That Neurologist DrK (2013), as well as DrB1 (KZN) 2020 and DrB2 (KZN) 2023 made me feel distinctly "disabled" with the manner and content of their diagnoses. A certain DrP (KZN) 2025 was the most empathetic and professional of them all and I respected his diagnosis of my condition! For the first time I felt comfortable and believed I could trust a Neurologist.

Let's focus on the challenge of weakening physical ability as a result of being parkinsed and my instinctive response, based on many years of enjoying physical activities. Since 1980 I had been a modern dance teacher, a regular power walker, a squash and table-tennis player, a hiker, a gardener and a DIY enthusiast. I thrived on physical activities, until PD hijacked me!

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2014->2020 🔎

Although the neurologist DrK did not use the term in my 2013 diagnosis, I gradually became aware that PD is one of a group of diseases that generated a physical challenge and, therefore, is regarded as a Movement Disorder. So, I started to wonder if physical exercise might keep the PD at bay and keep me less physically challenged for a longer period. This would be in lieu of chronic PD medication.

Between 2013 and 2017 I was based at a South African university in Pretoria, Gauteng Province, that is about 1340m above sea level. I worked in a large cluster of multi-storeyed buildings with long corridors and stair access to each of the floors. From 2014 I consciously focused on my physical ability and spent most of my work time walking in the corridors and up and down stairs rather than using the lift or escalator to attend meetings with individual staff or departments or to go to facilitate staff training sessions. Naturally, lunchtimes could be used for long walks outside the buildings that were located on a huge campus (see pictures). 

I supplemented my physical exercises with large and small-scale equipment (see below).

WEIGHTS During my corridor and stair walks in 2014 I became aware that my right leg was dragging more than usual and my right arm was not swinging as freely as my left. (= DrK's diagnosis!) So, I decided to "remind" my right arm and leg that it was not allowed to remain motionless: I bought wrist/ankle weights.

They were actually bags of a specific weight that are filled with sand and are attached to the body (ankle or wrist) with velcro straps. My logic was that while walking, the added weight was to remind me to swing my right arm and my right leg. It worked really well from 2013-2017 and I recommended this to other PwP.

 

TREADMILL I supplemented this with regular walking on a treadmill at a gym that forced me to walk at constant speeds for longer periods than normal walking. The treadmill encourages consistency and concentration compared to normal walking. This is especially good for those with PD and who can afford a gym membership.

The underlying advantage is the positive impact of cardiovascular health and improved blood circulation. While the treadmill did little for my arm-swinging, the constant leg and foot movements are great for us PwP.

ARMCHAIR For those who are retired, unemployed or can't afford the gym, an armchair is useful for stretching the legs, spine and diaphragm. The chair needs to be sturdy so a camping chair is not an option. 

 

I enjoy stretching. After cycling I grip each of the chair's arms and then raise both legs straight in front of me, parallel to and as high off the floor as possible while pointing my toes up towards the ceiling for 15 counts and then down pointing towards the wall for 15 counts. Then, while still holding the chair's arms I kick outwards with each foot for at least 30 counts each. Another simple challenge is to stand-up and then sit down with a straight back for 20 counts at a time. This is a great diaphragm/tummy exercise for us PwP.

PD CYCLING The Threshold mini cycle is 35cm high and 40cm wide so it may be placed under a table for cycling 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. 

The mini bike mechanism - a magnetic flywheel - is quiet and has 10 levels of resistance. I am currently able to cycle for between 20 and 30 minutes daily. As I am not able to maintain balance on a saddle this mini-bike is ideal as it allows me to sit on a chair and cycle: yay! 

FIDGET SPINNER My fingers are not exercised enough so my grandchildren introduced me to the fidget spinner (⬅video demo of action). It is about five centimetres square and has three weighted circular rings that spin around a central pivot point that is perfectly balanced on central ball bearings.

I am able to spin and balance the fidget spinner on each of the fingers of my left hand but only on two fingers of my right hand (my PD started on my right side). I use this daily.

PUZZLE CUBE My grandchildren also introduced me to something similar to the cube in this picture. Its action is similar to the revolving action and problem solving function of Rubik's cube. As my fingers on the right hand are generally stiff because of inaction, such a cube used daily is very helpful. I use it with both the left and right hands and although my fingers get a little sore the exercise is great.

ELASTIC BAND Playing with a thick elastic band by getting your fingers to stretch the band - with individual fingers or all five simultaneously - is also effective when you are seated and inactive. 

Squeezing a STRESS BALL - something I also do daily - has a similar outcome.

CONCLUDING "DIAGNOSIS"

I retired in December 2017.  Relaxed and at home, I went on a diet of large helpings of PD-pity, with occasional side-dishes of self-pity till we left our inland Pretoria home to settle on the east coast in Durban, KwaZulu-Natal in March 2020. Durban is also the home of our daughter and our grandchildren. In addition, this move coincided with the start of the COVID-19 lockdown period. 

Between 2018 and 2020, during retirement, I was unable to sustain my physical activities and I became an indulgent eater and drinker. My weight shot up from 78kg to 92kg. And the PD started to get worse. Sigh! So, in Durban, in 2020, I took stock of myself and my PD diagnosis and I decided to enter a new phase.  

This is the end of Phase 2. If my story continues to draw your attention, dear reader, then I look forward to your accessing Phase 3. Stay well and safe till next time...