International Parkinson's Week: lending hands
The week of 10-15 April 2023 was internationally observed as world Parkinson's Week and is anchored by James Parkinson's birthday on 11th April.
Another person who has 'lent a hand' is Dutch horticulturist, Dr JWS Van der Wereld, who also had PD. He developed a red tulip with a white tinge and named it the Parkinson's tulip, after Dr James Parkinson, whose essay and case studies on the shaking palsy in 1817, led to the disease being named "Parkinson's Disease" (see my Blog post 24 for a detailed account).
Supplementing the multi-disciplinary PD support was the presence of John Pepper. His success at reversing his PD diagnosis and controlling his PD drugs as described in his books and videos is meant to challenge the regular PZA attendees to refocus on alternative possibilities to treating PD. His presence as an octogenarian with PD is truly inspirational.
Internationally, as the threat of contracting PD - especially by the aged - is becoming greater, many countries are 'lending a hand' and have taken PD seriously. For instance, the Michael J Fox Foundation (MJFF) in the USA has, to date, raised $1,5 billion for PD research, as well as lobbying the US government to fight PD and to commit to eradicating it. In the UK there is Parkinson's UK (PUK), in Europe there's Parkinson's Europe (PE) while in India there's the Movement Disorders Society of India (MDSI). In South Africa I'm aware of two active and relatively new organisations: in Gauteng there's Movement Disorder Support (MDS) and in KwaZulu-Natal there's Parkinson's ZA (PZA).
While different Parkinson's organisations have opted for different colours of tulip throughout the world, the red and white one is apparently the original Van der Wereld creation.
The picture on the right was taken by my grandaughter, Piara, during a recent visit to the Keukenhof Gardens in the Netherlands. It fits the description of a Parkinson's tulip: red, with a white tinge.
Parkinson's ZA (PZA) advocacy
To generate awareness and to 'lend a hand' during Parkinson's week in April 2023, Parkinson's ZA (PZA) - a Durban-based organisation - which provides a range of free, multi-disciplinary lifestyle tools for those with PD, participated in a series of events. According to the founder of PZA, Rakesh Harribhai, the intention is to "build an ecosystem connecting people impacted by Parkinson's...[with] a support base of allied health practitioners and caregivers". Supporting those with PD comprises multi-disciplinary lifestyle options and providing the appropriate tools. This is the basis of PZA offering weekly speech-, physical- and occupational therapy workshops. Each two-hour workshop is free and the group of regular attendees is growing in numbers.
The World Parkinson's Week interviews and the Durban beachfront walk were to spread the word regarding Parkinson's as well as to raise public awareness of this PZA support initiative. And it appears to have succeeded. Some of the PZA Parkinson's Week events are listed below.
- Radio Lotus (Durban) interview (Anthony Courtney & Ari Naidoo) with two PZA members (poor audio, no link offered);
- Two-hour PZA workshop (Durban) facilitated by author John Pepper (conscious walking video and how to reverse Parkinson's);
- Durban beachfront 3km walk (video) for Parkinson's organised by PZA;
- Rising Sun newspaper (Durban) interview (after 45 seconds of video) with PZA founder Rakesh Harribhai;
- East Coast Radio (Durban) interview (audio) with PZA founder, Rakesh Harribhai; and
- Article on Parkinson's and misperception (link below) related by PZA member, Rajesh Nanjee.
OBSERVATION When speaking to him, I was impressed with his clarity in demonstrating the importance between a conscious and a subconscious action. This distinction is critical in the context of PD to override subconscious actions and push them into the background in order to foreground and to gradually use conscious actions as the only option. This will then gradually create sustainable, "new" (actually, the existing) muscle memory to assist us with the impact of depleted dopamine.
Anecdotal evidence presented during an interview with Rajesh Nanjee (IOL article link) unearthed an ugly side of public perception. Rajesh was diagnosed with early onset of PD many years ago - when he was 34 - and saw his health and coordination gradually worsen. Recently, a Durban restaurant manager accused Rajesh of "pretending to be disabled...to access special privileges".
To make matters worse, in the context of the "medication window", when the effect of PD medication starts to wear off, then, physically, one's poor mobility presents the ignorant public with a distorted image. This is in contrast with and quite different to when one has just taken one's PD medication and one appears to be normal.
Elsewhere in the PD world
- (ECR article) Pieter van Niekerk was diagnosed with Parkinson's when he was 44. Sadly, the severity of the disease resulted in his becoming gradually disabled so he lost his job as a fieldworker for the SA Council of Churches. As a result of PD debilitations, he needs assistance with most basic chores, such as eating, personal hygiene, brushing his teeth, etc. However, Pieter also believes that "one should never underestimate the strength of one's fighting spirit". To illustrate this belief, recently at the age of 58, Pieter completed a PhD in Theology at the University of Pretoria. Well done, and "sterkte" Dr Pieter van Niekerk!
- Neil Diamond was diagnosed with Parkinson's in 2018. In an interview, the 80 year old singer and songwriter said he'd been in denial for a few years, refusing to accept his diagnosis, and also disappointed as he had to cancel his Australian tour! But since he started accepting his PD condition he has been more relaxed about it: "There's no cure, there's no getting away from it." On a positive note, a Broadway musical on the life of Neil Diamond, "A Beautiful Noise", opened in December 2022. Neil "surprised the audience with a singalong of Sweet Caroline on stage". He's had an amazing life!
- Michael J. Fox, in an eight-minute CBS interview on 30 April, has a conversation about his life and his hopes. At age 29 he was diagnosed with PD and remained in denial for nearly 10 years. His Foundation has raised $1.5 billion for research into PD! While it is difficult to hear everything he says, the interviewer repeats many of his comments and that is a help. For his movie and television fans, there are many familiar snippets from Fox's past to make us smile! On a sombre note for those of us who have been parkinsed, Fox says: "You don't die from Parkinson's. You die with Parkinson's."
- Notable figures with PD - besides Pope John Paul II, Rev. Jesse Jackson, Muhammad Ali and George W. Bush - are in this illustrated list.
Conclusion
While diagnoses of the aged with Parkinson's appear to be increasing in numbers all over the world, and exposure to "toxins" is assumed to be one of the causes, it is a person who is diagnosed. A living being who has made a contribution to a community somewhere, who has or had a family somewhere, and who is stuck inside a Parkinson's-encrusted shell that becomes tougher to crack as time marches on.
So, during Parkinson's week, 2023 - and all previous years - we are not celebrating a curse but broadcasting solidarity and support to those people with Parkinson's who are in need of it. Till next time, dear reader...
