Generally speaking, Parkinson’s patients belong to the “low profile” category. Over the years, I have observed a strong tendency for Parkinson’s patients to be introverted, submissive and quiet. In addition, they are usually the kind of people who avoid taking risks. As such, many Parkinson’s patients spent most of their time at home, in their attempt to conceal their illness and avoid the society. Once, a friend said, “Despite them being so visible (i.e. tremors, dyskinesia), you don’t see the Parkinson’s patients.”
Understandably, these characteristics are partly due to their physical disability, social stigma and coexisting psychiatric disorders such as depression and apathy. People with depression and / or apathy lack motivation to carry out even simple daily tasks, and are often described to be uninitiated or “lazy”. Some researchers have also attributed the “low profile” nature of Parkinson’s patients to the so-called “Parkinson’s personality”.
Nevertheless, there are a few (really, really few) Parkinson’s patients who are really “extreme” – they are outgoing enough to become leaders in the society and bring about radical changes in the Parkinson’s care system. As such, I have always been fascinated by the wonderful achievement of these exceptional Parkinson’s patients. I always try to understand their unique personality, philosophy and reasons that accounted for their “unorthodox” nature.
Fortunately, despite their rarity, these “unorthodox” Parkinson’s patients have made rather huge impact in various parts of the world. In my country, the three Parkinson’s heroes who have “liberated” the Parkinson’s community are the late Mr. Lloyd Tan (the founder of the Parkinson’s support group movement in this country), Mr. Chee Liew Seong and Mr. Hero Teo.
In the United States, Mr. Michael J Fox has been the major catalyst in promoting the awareness of Parkinson’s and research work. By constantly providing funding for research in Parkinson’s, the Michael J. Fox Foundation (MJFF) aims to develop more effective treatments, and ultimately a cure for this devastating illness. To date, MJFF has funded over US$142 million in research.
Recently, I have got acquainted with another two outstanding Parkinson’s patients – Rayilyn Brown and Diane Wyshak. Both of them have massively contributed to the Parkinson’s Information Exchange Network (PEIN), which was founded by Barb Patterson and John Cottingham in 1993. Rayilyn Brown (fondly known as Ray) is the director of the Arizona chapter of National Parkinson’s Foundation while Diane is her research partner. Both of them are currently still sending numerous useful emails to the Parkinson’s community through PIEN (recently my email account has been flooded by Diane’s messages). In view of the fact that Parkinson’s website has become an essential component of optimal Parkinson’s care nowadays, their contribution is invaluable. Even I have benefited from their input.
Apart from the Parkinson’s heroes named above, I am sure that there are some other “unorthodox” Parkinson’s patients or heroes in other parts of the world whom I have not known, and also have significantly contributed to the Parkinson’s care in their respective countries. I’d loved to get to know them, and pay tribute to them. I am sure that my list of Parkinson’s heroes will become longer as I discover them one by one.
What are the objectives of creating this list of rare Parkinson’s heroes? Firstly, it is a tribute to them and their selfless contributions. Secondly, I’d like to send a strong message to the whole world – that it is the Parkinson’s patients themselves who should lead the Parkinson’s care in the world, and not doctors or politicians or etc.
Why should the Parkinson’s patients spearhead the Parkinson’s health care?
Obviously, it is because the Parkinson’s patients are the ones who understand each other’s sufferings more than others. If they do not fight for their rights, who else will?
For many people (especially those who are not suffering from Parkinson’s), Parkinson’s is still not considered to be an important health burden. As Parkinson’s does not directly kill, the policy makers such as politicians and health authorities do not consider Parkinson’s as priority compared with other killer diseases such as cancer and HIV. Many people fail to realize that by not being a killer disease, the impact of Parkinson’s is really huge as patients cannot escape from life-long sufferings. In contrast, people who have killer diseases such as HIV and cancer actually do have a way out or an escape mechanism – death is an end to sufferings.
Some people may wonder whether the small number of Parkinson’s heroes in this world is enough to bring positive changes to the society. Well, I am not worried at all. Personal experience tells me that when it comes to doing community work for Parkinson’s (or for any other illnesses), it is the quality of the manpower which is important, and not the quantity. I have worked in NGOs which have 15 committee members but of this, only one or two members are being productive. Some people say “too many cooks spoil the soup” – it is true.
So, to all the Parkinson’s patients who read this message, do not despair. Always remember this – we need only a few heroes to change the world.
Dr Chew Nee Kong, Kuala Lumpur, Malaysia
25 July 2009.