(63) Hindsight for Foresight (Phase 3)

PHASE 3: LIFE & PARKINSON'S (2018-2020)

I ended Post 62 with thoughts of self-pity and feelings of insecurity, perhaps because I was reflecting on 2017 as the end of a fulfilling academic life in higher education since 1977. Also, between 2013-2017, in an attempt to deal with Parkinson's without medication, I had a physically active life. So, why was I suddenly insecure in 2018? 

Maybe I was attempting to suppress my emotions due to the visible signs of nearly six years of Parkinson's Disease (PD). I am referring to PD's motor symptoms (slowed movement, tremors, stooping, poor gait and freezing). I became self-conscious in public spaces and I am still experiencing that! My new reality was probably the cause of my growing sense of anxiety. Sadly, my anxiousness affected my wife too. I needed to locate a reset/restart button, and I did...

In 2018/2019 I discovered a physical activity to kickstart my waning energy levels: dance classes for PD people like me. I was excited about a challenge for the first time in years! The weekly class in Pretoria was led by a trained Dance for Parkinson's teacher MarnaB, who was passionate about us and her teaching. Dance activities were a combination of seated, standing, solo and group exercises with appropriate music and instructions. I was relaxed, less anxious and challenging PD again. Dance for Parkinson's (DfP) is based in New York city and offers regular online DfP classes.

Unfortunately, there is still no physical DfP class in Durban. The online class is convenient but it's not engaging. The live dance class in Pretoria allowed me to share time (e.g. group coffee dates), space and energy with other People with Parkinson's (PwP), which one cannot experience in an online class, right? But, like the online 25-minute Gentle Chair Yoga and the 5 Minute Tai Chi, online DfP is a great option for PwP, especially when fighting PD with regular exercise.

ANXIETY & PARKINSON'S

A brief detour before we return to my PD story, dear reader. I will try to unpack anxiety and PD in the most accessible way that I can...

According to Dissanayaka, Torbey & Pachana (2015) "While assessment of depression in PD has been a focus of clinical research for the past decade, assessment of anxiety in PD has only received attention very recently, despite the high prevalence of anxiety in PD." Their literature search identified nine scales with which to measure and then grade anxiety and depression, including a new Parkinson's Anxiety Scale (PAS) for PwP. However, this PAS excludes those with dementia. 

The authors acknowledge the PAS usefulness and believe it's a valid instrument to measure anxiety. However, they observe that more should be done regarding examining levels of anxiety in the "off" period during PD medication times. Also, in their scan of available research, they note there is no indication of physiological change or accompanying signs and symptoms in PwP during these "off" periods. Hence, they believe that additional research is needed to develop more appropriate instruments to measure anxiety in PwP. 

Khatri, et al. (2020) agree with this in their article: Anxiety: an ignored aspect of Parkinson's Disease lacking attention. They suggest that anxiety in PD has a negative effect on PwP and that anti-Parkinson's drugs like "...Levodopa provides symptomatic relief...[but] its effect on neuropsychiatric complications like anxiety is elusive. Presence of anxiety worsens the condition and challenges therapeutic management of the PD." 

This concern was addressed recently. In July 2025, a New York university psychologist received a grant from the Michael J. Fox Foundation to do further research into anxiety. Professor Bishop is of the opinion that there are "unique features of anxiety [that] suggest that it is organic and not simply a perception driven by disease diagnosis." Such anxiety features actually echo the earlier concern of Khatri, et al. (2020) and include research into "autonomic symptoms, such as sweating, a racing heart or physical nervousness".

A graphic abstract of what Khatri, et al. (2020) describe as the "Mechanisms involved" in creating anxiety and examples of a possible "Therapeutic strategy" is below. Their main concern with a purely Pharmacological treatment of anxiety is the possibility of severe side effects while the PD continues unchecked. Hence they suggest one should consider "Complementary therapies". 

I have tried complementary therapies and suggest that PwP look into Ayurveda as well as the effect of Meditation (mindful meditation or transcendental meditation) as additional support to lessen the effects of PD. I am unable to comment on a "Non-Pharmacological Approach" such as DBS (Deep Brain Stimulation) but have added a link to some info. The same applies to CBT (Cognitive Behavioural Therapy) as well as TMS (Transcranial Magnetic Stimulation).

 

Another "complementary therapy" is acupuncture. According to Pinto (2022), in Regular Acupuncture seen to ease Anxiety in Parkinson's Patients, PwP "...who underwent acupuncture for eight weeks had significantly lower levels of anxiety...than those who received a sham procedure, a clinical trial from China reported." Meditation or Ayurveda may be worth trying if it provides relief.

   

A further example of complementary support to ease the effects of PD is to indulge in the creative arts - the visual arts and music - as therapy. Like my joy upon discovering DfP in Pretoria, Inácio (2025), in Creative Arts Therapy can ease Anxiety in Parkinson's... reports that while motor symptoms may be addressed with anti-Parkinson's medication, "Parkinson’s can lead to nonmotor symptoms that significantly impact [the life of PwP, and] may include cognitive decline, sleep disturbances, depression, and anxiety." According to the Inácio (2025) report, a European team (Austria-Netherlands) is now attempting to "bridge medical and arts-based practices, ensuring that our intervention is both practical and meaningful for individuals with [PD]...". Interesting!

For visual learners like myself, dear reader, here is a short video on Anxiety and PD. Anxiety is appropriately described here as a "non-movement symptom of PD".

MY PARKINSON'S JOURNEY: 2020-2024

On 23 March 2020, while my wife and I were on vacation, President Ramaphosa announced a nationwide lockdown to prevent the spread of the COVID-19. The lockdown and ban on all local and inter-provincial travel was to commence on 27 March. Unfortunately, we were 3.5 hours from Pretoria and 3.5 hours from Durban. Solution: travel to Durban and start my retirement there.  

Parkinson's and Photobiomodulation (PBM)

In 2019, a relative (OM) informed me of a Carte Blanche TV documentary on light therapy (see the video), also known as photobiomodulation (PBM). A Durban neurologist, Dr Bhanjan, was using low level infrared light to treat a number of conditions, including PD, at the Durban Neurolaser Clinic. I was curious and enquired but they had a waiting period of 5 months. However, by March 2020 many people had cancelled due to COVID-19 restrictions and so, I was able to get an appointment in April 2020: a serendipitous event... 

In Post 11 (there's a link) I describe the initial introduction to PBM, my scepticism leading to an acceptance of this therapy. After deciding to stay Parkinson's-drug free for since 2013, I noted a high degree of "scoffticism" :-) from many experts in medical science regarding my opting for complementary therapy. They needed evidence-based research and clinical trials of PBM before they would approve. I know an eighty-year old pharmacist (AC) with first-hand knowledge of PD but have yet to meet medical specialists with PD! My experience is merely anecdotal :-(.

My argument is the following: I have lived with Parkinson's and I have first-hand knowledge of both PD's impact on me as well as that of any alternative/complementary therapy (such as ankle weights, fidget spinners, music, dance, cycling or PBM) so I approve when it works for me! 

I reflected on the impact of photobiomodulation on me in Post 13 and a summary appears below: 

  

"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 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 PBM would lessen the effects of PD so I've not been exercising.)"

The fourteen observations above (May-July 2020) gave me some insight into my intruder, PD, and how difficult it was to devise a plan of attack. There were some positives but there were negatives too. I had to believe in the big picture and be consistent.

The most positive outcome of my investment in a year's PBM is that my confidence had returned and that this Blog was launched in March 2020. Till August 2025, worldwide, I have had 21,355 visitors to my posts and that warms my heart, dear readers.

Ayurveda

In 2022, after 10 years of being Parkinson's-drug free I opted for the Ayurveda approach to PD. 

There was a lifestyle change involving the following: a diet avoiding certain flour and bread; avoiding stimulants such as coffee and alcohol; avoiding certain milks; avoiding processed food; deep breathing exercises; PD stretches/exercises; and meditation. Eating should be carefully paced and enjoyed rather than rushed.

In addition there were herbal remedies to take daily: two capsules daily to relieve stress (Ashwagandha); two capsules daily for anxiety and to assist the memory (Brahmi); and three capsules daily to assist with dopamine replacement (HP500).   

 

Unfortunately, the HP500 only worked for me from January 2002 till March/April 2025, when I stopped taking it. (In Post 64 I will elaborate why I stopped.) However, I am still taking the other two herbal remedies, I meditate, I am doing the breathing exercises and still avoiding certain foods and ingredients. 

Caregiver

In 2022 my wife hired a caregiver who, over the years, had been working with PwP. Besides being a companion and responsible for my well-being, she has created in me a sense of independence. Although she only works for two-thirds of the day, she constantly reminds me what I ought to be doing, and I appreciate that! On weekends and late afternoons I regularly go for short walks on my own, because she has made me feel more confident than before.  

SUMMARY

I had been fighting PD for 9 years without any herbal remedies or pharma products. I believe my body and mind has been building up a form of resistance to PD during that time. All those experiences have generated a cloak of physiological and psychological stubbornness when it comes to my fighting Parkinson's. Unfortunately, the Ayurveda approach was an unsuccessful three-year attempt to control PD.  

CONCLUSION  I am 73 years old. I was diagnosed with PD when I was 61 and I believe it could be due to (1) unconsciously inhaling industrial chemicals (wheel cleaner, paint and glue) and (2) trauma. (2.1) I must have had a platoon of the Parkinson's army infecting my brain from the time of my car accident in 1956/57. (2.2) The Parkinson's army regrouped in 1999 when our son died. (2.3) Then they started actively recruiting a new army in 2012 when I had to take early retirement from a job. So, Ayurveda had an uphill battle for three years. Then Parkinson's took control in 2025 and I was forced to engage a-Pd to survive! 

The concluding a-Pd episode (Phase 4) will be unpacked in Post 64. Take care and be safe till next time, dear reader.

   

(55) PD & control: my IN/Dependence

Persons with Parkinson's (PwP)

As a Person with Parkinson's (PwP) I often ponder the imponderable when an action I'm attempting to carry out is disturbed and out of control by my freezing or by my limb tremors. Some of the pondering involves considering whether or not my being parkinsed is:  

1. An Internal malfunction in my body that could be the source of the 'disturbed' action and this would include genetic factors inherited via "faulty" genes from my parents, resulting in my Parkinson's Disease (PD); or the result of  
2. External issues that could also be the source of a 'disturbed' action and include drug abuse, effect of cellphone use, impact of chemical exposure, accident trauma, etc. resulting in PD; or
3. ?

If it's rabbit hole 1. above, dear reader, then I should be able to find a medical specialist or researcher who will be able to point out a process to follow, leading to possible diagnoses of my gene trail. If it's 2. then I should also be able to find a medical specialist or researcher who will be able to offer diagnoses and ways to explore external issues. However, both these views are mere speculation unless I am a permanent resident of a First World country with reliable medical support. 

Hmmm...unpacking my thoughts in such a simplistic manner allows me to wander down a third rabbit hole: 3. The "Internal" and the "External" issues are actually two sides of the same coin. Both result in the same outcome, namely, being controlled by PARKINSON'S DISEASE! I become dependent and allow PD to determine my future. (Sigh!) 

I could also focus on the positive side of dependence and accept someone into my life to assist me with my daily living as a PwP. This is also known as assisted daily living (ADL) but more about that later!  

Dependence or INdependence or...?

Let me now explore a thought related to the three issues above via another "*noitcelfer" (*see Post 54 😉) regarding the impact of being independent (IN) or dependent (D) relative to my life. A brief outline is represented in the following list. 

• 1977 - first salaried appointment as a post-graduate student
• 1980 - first salary as Lecturer (➢IN, employable professional but D on employment)
• 2013 - first diagnosis of PD (➢D on medical research but IN to decide on direction)
• 2017 - officially retired in December (➢IN and employable but as PwP, D on pension)
• 2018 - first pension in January (➢D on pension as income)
• 2022 - first started Ayurvedic regime for PD (➢D on treatment but IN of side-effects)

Between 1980 and 2017 I was earning a regular salary with benefits and became dependent on having employment but my creative spirit resulted in my not being dependent on one specific employer. When retirement ended my working life in December 2017 I became independent and not reliant on any one employer. But I am completely dependent on a pension as my monthly income. I had been employed for 36 out of 40 years when I was diagnosed with PD in 2013 so I am grateful not to have had early onset PD. 

My last employer offered me part-time employment for 2018 but I turned down the offer in order to focus on my PD full-time. In retrospect, that was not a wise decision for my career but perfectly suited to discovering more about my PD and how to engage with it.

So, like the internal and external issues regarding PD above, my experience of IN and D in my career is that they are often relative to each other. Below is another "*noitcelfer" (*see Post 54 😉) that is linked to personal assistance and some effects of IN and D.

Assisted Daily Living (ADL)

According to the Stanford Parkinson's Community Outreach programme in California, PwP "want to remain as independent for as long as possible." To support this belief as well as the notion of "Assisted Daily Living" (ADL), they have produced a PwP-friendly booklet entitled Be Independent (2009). It is very useful because, as you can see, the language used is simple and the many, accompanying hand-drawn illustrations are apt. I have found and used a number of their practical tips.

A few years ago, my wife diplomatically introduced the topic of caregiving and then, soon afterwards, introduced a caregiver, NM. Naturally, I was certain about the "Daily Living" but completely uncertain about the "Assisted" part. Well, grudgingly, I agreed to the idea, a trial period followed and now I would be lost without her, even though she only spends part of the weekdays with me! The timing of her arrival and presence as a caregiver was perfect, given my growing Dependence - since late last year - on someone to help me to shower and to dress.  

In conclusion, I have now become Dependent on and enjoy being assisted by NM, so far less stressed about my state of assisted daily living. I accept that I'm a PwP: I am 72 years old, on a drug-free PD regime, and my brain and memory are still good, as is my handwriting. There is much for which I am grateful. So having to rely on assisted daily living has become part of my being a PwP! So, I'm unable to drive, I walk funny and I have visible tremors but, I am a PwP!!!

The most positive part of being assisted with my daily living is that I have daily routines between 08h00 and 14h00, from Mondays through to Fridays. The constructive part of having eating & exercise & entertainment & medication routines managed and supervised by NM (and my wife) is that I exercise on my own over weekends and public holidays when NM is not with me rather than take those days off :-). It's an example of the complex relationship between one's perception of the notion of INdependence and Dependence compared to what can exist in reality.     

Till the next post dear reader, do take care!