Poverty or Prosperity and Parkinson's Disease

Arriving in Singapore just 24 hours after leaving a village in northern Thailand left me bewildered and out of sorts. From time to time it has proven difficult to face the need to change our mindset when moving from one stop on our world tour to the next.   It has required total immersion in the present situation and avoidance of any comparisons between countries. It is like dealing with the onset of Parkinson's disease. It also demands that one maintain the ability to shift gears and live in the present, sidestepping any comparison with the past and any discouraging anticipation of the future. 

Despite their differences, in every one of the prior 11 locations we have visited so far (in South America, Africa, the Middle East, and now Asia) there has been evidence of people with Parkinson's having great unmet needs. When it comes to helping people with Parkinson's, there are significant disparities between Canada, as an example, and any of the countries visited thus far. In some ways, arrival in Singapore signaled the end of being confronted daily with the resource differential between the underdeveloped or developing global South and the relatively wealthy "Western culture". While it is somewhat reassuring to know that in my country people struggling with PD have significant resources at hand, there is also a sense of sadness and a sincere desire to somehow address the needs of others. I have come to recognize that the portion of the Parkinson's community that operates in the "have" nations needs to do more to assist those in the "have not" countries. How, I am not exactly sure, but maybe my travels over the past 55 days will provide the necessary context and perspective for change. It appears that the assumption made by the title of my round the world trip ("Shake up My World" tour) has been established. 

Julie Lau and Parky (Singapore)

In virtually every place we have visited to date, organizations helping people with Parkinson's, if they exist at all, are struggling. Some of the challenges they face could be better addressed by cooperative resource development. For instance, there seemed to be similar ideas being launched in various locations that could each be improved upon by sharing their experiences. Take, for example, the fact that numerous organizations have pursued dance therapy, speech therapy and tai chi or yoga as a means to assist people with Parkinson's. However, there is little, if any, coordination or sharing of how this is done in order to assist others with the planning and development stages of such programs.  Everyone seeking to help can learn from the apparent victory or failure, struggles or successes of other organizations. Instead, many fledgling or newly founded Parkinson's associations, clinicians and therapists "reinvent the wheel" to some greater or lesser extent. 

Maria Barretto (far right) and team at Bombay Hospital, India

There is much that would divide the Parkinson's community including geography, economic realities, language, technology, politics, medical services, and capacity. However, there is a great deal that links us together, including the motor and non-motor symptoms we share, the fears and failures, courage and successes, the longing to find a cure, and the sometimes overwhelming sense of hopelessness, helplessness and fatigue.  But if we are to serve the needs of people with Parkinson's around the world, stable bridges between members of our community must be built. This starts with making relationships a priority. It is the people that make the difference. Leaders such as Julie Lau in Singapore, Sarita Sidoti in Argentina, Maria Barretto in India, and Agustin Recabarren in Chile need to know each other. 

Sarita Sidoti and Parky with voice therapy class in Buenos Aires

Relationships form the necessary network in which to effectively communicate, cooperate and coordinate with each other. The onus is not on organizations, but on each of us to initiate, facilitate and take responsibility. Here are some things that I've learned from others so far.

Communication

-          We must learn to listen first, and talk.

-          We must avoid making assumptions, and sincerely seek to understand the needs of others.

-          We must make it as simple as possible for communication to take place.

-          We must build on existing relationships and facilitate new ones among individuals, and groups.

Cooperation

-          We must be able to compromise our own small agendas and take a global perspective.

-          We must minimize "turf wars" between organizations, as these steal vital resources, energy and community.

-          We must work hard to agree on how to serve the best interests of people with Parkinson's.

-          We must be willing to share ideas, experiences, and even resources, and avoid "hoarding" anything that would assist the common cause.

Coordination

-          We must be prepared to reach out and seek agreement on common approaches.

-          We must be secure enough in our respective "calling" to focus on what we do best.

-          We must avoid at all costs division caused by petty differences, personality conflicts and jurisdictional disputes.

-          We must work together to serve the global Parkinson's community. 

Agustin Recabarren (second from right) in Santiago, Chile

These ideas may sound idealistic, but the status quo is not acceptable. We are a community that must recognize its strengths and weaknesses, addressing its needs in the best interests of all, whether prosperous or poor.