(37) Dissecting PD, one assumption at a time

😟ACKNOWLEDGEMENT😟

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

Sit-t! Stay-y!

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

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

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

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

Theory & rationale: avoiding PD drugs

THEORY I acknowledge that I may have fertilised my mental and physical fields for the PD forest to flourish. By accepting that I was parkinsed, I encouraged PD - like an alien, invasive species - to invade my mind and body. By believing that I was sick, I encouraged my mind to respond to and reinforce Parkinson's symptoms. The projected symptoms became manifest in me and I became a perfect Parkinson's sufferer. (Sigh!)

RATIONALE After a neurologist presented me with a positive diagnosis of PD in 2013, my response may appear naive: TO COMPLY with decades of medical and pharmaceutical research that recommends drugs with unpredictable side-effects (anecdotal and researched) and accept that gradual drug dosage increases will be the norm, OR TRUST MYSELF to seek out alternatives that might or might not be mainstream? I opted for the latter, the most radical alternative being cannabis oil (2015) that did not work for me. 

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

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

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

A kick-start?

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

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

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

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

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

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

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

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

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

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