Being diagnosed with a life-altering movement disorder like Parkinson's Disease (PD) is physically exhausting because it represents, in my case, a three-pronged attack: (1) testing my ability to cope with a movement disorder, forcing me (2) to reroute my reality to deal with a new normal and (3) to adapt & attempt to slow down this degenerative disease. <ari.naidoo@gmail.com>
The indefatigable Fox!
I have only had PD for ten years and in the past five years have had four falls (the last in February 2022) that did not result in serious injuries. I cannot imagine being Michael J. Fox and first to have been in denial for seven years and then to fight PD for another 24 years! During the latter period he has had his fair share of PD medication as well as serious injuries sustained during falls, some resulting in major operations.
On a positive note, his vision and advocacy for PD since 2000 has led the Michael J. Fox Foundation (MJFF) to raise a staggering $1,5 billion to fund Parkinson's research into cures, early diagnosis, alternative therapies and accompanying support. The Foundation has also played a role in the recent Parkinson's lobby in the US Congress, where there is now, for the first time, a National Plan to End Parkinson's Act, sponsored by both a Republican and a Democrat. This plan, if adopted, will attempt to slow down the human suffering of increasing numbers of US citizens and decrease the billions of dollars spent annually to fight PD.
As far as notable awards are concerned, in 2010 Fox received an honorary Doctorate in medicine from the Swedish Karolinska Institutet. This was for raising funds for PD research via the MJFF and for generating an awareness of PD. Most recently, he received an honorary OSCAR: the Jean Hersholt Humanitarian Award presented to him in November, 2022 for his humanitarian work and fight against PD.
USA and RSA
Michael J. Fox's persistence has carried him through a constant fight against his own symptoms since the 1990s. His firm belief in a bigger picture, has led to the success of the MJFF to raise funds and broadcast PD advocacy since its establishment in 2000. It started as something personal and has bloomed into an initiative embedded in the idea of a public good, available to all Americans.
I have to remind myself that the USA is a first-world country with a different set of advantages and accompanying challenges for a person-with-Parkinson's (PwP) compared to us in South Africa. In 2020 there was an estimated 1,073,894 PwPs in the USA. I wonder if such a specific estimate of PwPs has ever been made in South Africa besides general research and data on PD in Africa (this article also describes stigmas related to PD)? Below is an excerpt on PD stigmas followed by two anecdotes on PD.
According to a 2015 document on the MJFF website, regarding The Stigma of Parkinson's Disease,
"...aspects of Parkinson's -- visible and invisible -- can be misinterpreted, causing a stigma sometimes associated with neurological disease. Slowness of movement or speech may be perceived as intellectual disability, imbalance as intoxication, masked facial expression as an unfriendly demeanor, and tremor as nervousness. Internalizing these judgments or trying to hide the disease to avoid discrimination only make symptoms worse."
ANECDOTE 1 A friend - a PwP - shared a disturbing story of a KZN supermarket manager, a fortnight ago, who accused him of being intoxicated because of his imbalance and slurred speech. It was the first time I had heard, first-hand, of such an ugly and painful experience in KZN: a customer was merely querying an issue regarding his purchase. Such insensitivity might occur in other provinces of South Africa, too.
ANECDOTE 2 In 2020, while preparing to sell our Gauteng flat before moving to KZN, a contractor noticed my tremors. When I described my PD and explained that I was part of a support group he was surprised. He then explained that his younger brother displayed such symptoms for years but it was regarded by his family as some form of "evil magic" and they had kept him at home. This appeared to be young onset PD! I believe there may be many cases like this across the country but they are housebound because of this stigma. There may be a similar scenario in South Africa for those with epilepsy.
Back to the bigger picture. According to the Davis Phinney Foundation, there are over a dozen different types of Parkinsonism, an "umbrella term to describe a group of neurological problems", yet only about 10-15% constitute actual Parkinson's Disease as described in my Blog. The six types of Parkinsonism listed (besides PD), are:
- Drug-induced Parkinsonism;
- Dementia with Lewy Bodies;
- Multiple System Atrophy;
- Progressive Supranuclear Palsy;
- Vascular Parkinsonism; and
- Corticobasal Degeneration.
I am of the opinion that we are not vocal enough in South Africa regarding the complexity, treatment and identifying this neurodegenerative disease and that PwPs should make PD more public! There is a Presidential Working Group on Disability - established in 2019 - but their focus is not on advocacy of persons with disabilities but on their economic empowerment, as repeated in President Ramaphosa's 2021 address. So, we PwPs, require concerted advocacy to raise public awareness of Parkinsonism to ensure our rights. And using the MJFF approach, persistence will be the key to any success.
