NB (20) above indicates the numerical order
No time like the present
In December, a young friend took ill and died from Covid-19 within five days. What a shock to my system! (And the Covid-19 virus has already mutated into variants on a few continents.) While I was finding ways to deal with this personal impact, within a few weeks, two colleagues (and good friends) succumbed to cancer and last week another friend passed away after suffering a stroke. Life is a gift and I need to revisit this fact by reminding myself of mortality, in a positive sense. This begs the question: Have I made a difference to others during my life and have others made a difference to mine?
There is so much written on Parkinson's Disease (PD) that has been scientifically researched and even generated a Nobel Prize, yet, world-wide, there are growing numbers of people contracting PD. In this blog I have scraped the surface with two reviews in earlier post 3 (PD experiment in a movie) and post 4 (PD clinical trial of GDNF), in case you missed them, dear reader. What progress has been made over the last fifty years - either by medical science or drug-free approaches - to make us better understand Parkinson's?
Fox in the box
Someone who has made a difference to PD research is Michael J. Fox. Although I am a sceptic when it comes to most pharmaceutics-driven research around PD, his Foundation walks the talk. One unusual clinical trial in Australia and supported by the Michael J. Fox Foundation is the StandingTall-PD project. It aims to repurpose Sensoria smart socks and this wearable technology will help PD sufferers with their gait and balance. These socks were originally developed to assist runners improve their technique.
Another project is the Fox Insight research programme, an "online clinical study building a large, diverse cohort of people with PD...". I was curious and as I am not seeing a neurologist, I decided to join this programme. I was impressed. There is a long survey (under two hours long) to complete every three months, and access to tools to assist before visiting one's neurologist. These are some of the many projects supported by the Foundation that has already raised a staggering $800m to support PD research.
REVIEW: "No Time Like the Future" by Michael J. Fox (2020)
Sub-titled "An Optimist Considers Mortality" (after reading its meaning becomes clear) this book unpacks the life of Michael J. Fox. His story see-saws between two points of tension: a man in his late-fifties reflecting on thirty years of PD and a successful twenty-nine year old actor and athlete peering into a future with PD! To understand the tension, it helps to have seen his "Back to the Future" movie trilogy as well some of the many award-winning TV series, the most recent in South Africa being "The Good Fight". If you've not come across his performances over the years, then this book will help unpack his life and his PD.
Diagnosed with PD in his late twenties when he had already become a successful screen actor, he had some serious choices to make, starting with public disclosure of his PD status. This was to impact on a career that started early in his life when he left high school in Canada to find work as an actor in the USA. The PD diagnosis was a blow to this young athlete whose energy and drive had known no bounds until then. He and his wife, Tracy, had to contemplate their life choices and their four children became an integral part of that decision. It was a matter of engaging with his new PD status by gradually developing a new, mature version of the old Fox.
Through aptly titled, short chapters with multiple sub-sections, the reader is invited to join him on his roller-coaster life-changing health journey. From his PD and accompanying rehabilitation to removal of a tumour on his spine (and rehab) to a terrible fall that shatters his arm (and introduces more rehab). For me, these are the most revealing as they involve detailed accounts of the impact of PD and how one's work and home environment can become an obstacle course! That's a major thread of the tapestry that he weaves.
The longest is chapter 4 entitled "High Times" where he gives an exquisitely detailed account of a trip to the Kingdom of Bhutan, the country attempting to instil and measure ingredients for its peoples' Gross National Happiness. A good example of Fox's writing is captured in his description of the flight over a mountain range in order to reach Bhutan: "Flying over the Himalayas is like housesitting for God..." (p.36). The chapter is beautifully written, paying attention to the beauty of the unique surroundings and, in my opinion, tempting the reader to pay a visit.
Embedded in this chapter and others is what I'd call the PD paradox. Danger is always present when a parkinsed person is without assistance in an unfamiliar environment. This occurs during the Bhutan visit when Fox falls on a steep pathway. However, being in an unfamiliar environment can also be a safe space, where the environment encourages someone with PD to reimagine what is normal. This is the equivalent of restarting a computer or reassessing one's needs with confidence. An example is of Fox's waning need for chronic PD meds while in beautiful Bhutan. I've experienced a similar 'waning need' a few times. For me, these are Pinky resistance moments.
The idea of this PD paradox of the unfamiliar being both a 'dangerous' yet 'safe' space could be explored in this context: the nature and impact of PD as a destructive force versus learning how to nurture alternative ways to deal with PD. I have alluded to this in posts 16 and 17 as my Pinky and The Brain approach to dealing with my PD.
A third set of threads in the story is Fox Foundation work and fund-raising that attracts committed individuals to get involved in running an extraordinary multi-million dollar organisation. This includes the Foundation participating in ordinary events such as golf days and marathons.
A fourth set is the camaraderie that develops as a result of his attempt to play golf and its place in his life. Golf has little to do with his competence as a golfer but everything to do with accompanying routines, friendships and applying his skills to a set of fun tasks. (I can vouch for this after three months of trying to learn to play golf: it tries your patience and it is an expensive hobby.)
Shaken, and stirred
Double Oh Seven and his antics would be a welcome addition to the arsenal of strategies required by those who are parkinsed. I wish my tremors would subside so I am stirred into normality rather than constantly shaken. Tremors are energy consuming when they are allowed to be. I am constantly fighting them while I'm awake.
In the final analysis, Fox's PD and accompanying afflictions are described in useful detail in this book and regularly criss cross his life story without confusing the reader. I have new-found respect for him. For those readers who also are or were Thespians, there is much to glean from his perspective of an actor playing the role of a character with PD. This is clearly illustrated in his role as defence attorney, Louis Canning, where the character works within the physical bounds of a parkinsed person, rather than attempting to hide the PD symptoms.
Till I write again...
The final curtain
I am grateful for having crossed the paths of four souls who made a difference to my life: Vaneshri; KribenP; PaulB; and SibongileK. R.I.P.
