We Are a Community

Her tears were real as she sobbed and struggled to find the words in Spanish to express her heartbreak. She was the mother of a 33-year-old man who had recently been diagnosed with Parkinson's disease. She knew it wasn't her fault, but even so she felt painfully helpless. He was too young and she would've taken it upon herself if she could. The other men and women in the room waited patiently and understandingly for her to express her sense of loss. I was a stranger who had asked an innocent question that had touched her tender heart. When her words were finished I felt like a friend drawn to hug this woman whose name I did not know. She accepted the hug as if knowing that, despite not understanding her words, I understood the ache of her heart.

CETRAM is not just the clinic in an old building in the Independencia district of Santiago, Chile. Nor is it simply a teaching facility for medical profession students at nearby universities. It is a community, a cooperative of professionals and people with movement disorders.  A group of friends who confront the unique demands of the disease with the collaborative assistance of other friends; neurologists, occupational therapists and physical therapists. But even that description is entirely inadequate.

This facility is not well-known to the public at large, as was evident from the fact that the taxi driver who took me there checked his maps repeatedly, and then drove to the wrong location, an upscale building behind a gate with a security guard. Perhaps I had misled the driver to expect something different, given that I wore a jacket and tie out of an abundance of caution (my rule being, always slightly over dress when uncertain about what is appropriate). In reality, the Center is located in a "casual" (completely unimpressive from an architectual view) single level building that was a mixture of mostly small, functional rooms. I was early and let myself in the front door and wandered through several rooms before locating a large recreational area in which a group of some 25 young people were laughing, talking loudly and enjoying what appeared to be a light meal. Upon appearing at the door, Daniela, the woman I spoke to on the phone the day before in order to confirm arrangements, quickly stood up and came to greet me. Like a number of others I was to meet, she performed numerous roles within the community, from exercising her professional credentials as an occupational therapist, to lead in administration, marketing and promotion, external affairs and all-around cheerleader. Her eyes and smile were filled with an infectious warmth and passion that I was to discover came from a heart that cares deeply about the people she served and served with.

Introduced to the students (who were there for the purposes of performing a practicum for their particular professional medical career studies), I was shown various occupational and physical therapy inventions, at least some of which were unique to this Center. A number of these "aids" were actually "homemade" from secondhand materials by members of the community for their own personal use. They were practical, inexpensive, and gave their users a sense of pride in the creation of them. In short order, joined by Dr. Pedro Chana, the lead neurologist and founder of the Center, I was led on a tour of the single-story building, stopping to be introduced to each person we met along the way, all of whom seemed genuinely warm and happy to be there.

Having been signaled that things were ready, Daniela and Pedro led me to a small meeting room in the center of which was what appeared to be a large kitchen table. Around the table sat 10 people, with several others occupying peripheral seats around the room. I shook hands with each one, starting with the president of the Friends of Parkinson's Group organization, Agustin. It became obvious that, despite dyskinetic movements that betrayed his PD, he was very capable at expressing himself (occasionally in English), often with humor and a mischievous inclination. I was given the opportunity to share freely the vision for my round the world journey and this blog, that being to encourage people in the Parkinson's community, and others who like me need positive input every day to battle their own unique experience with a degenerative, incurable disease. There was an excitement and warmth that filled the room as I seemed to instantly be accepted as one of the "Friends". It was not only Pedro and Daniela (who, as well as working together, were married) who expressed passion and pride for what is being created at CETRAM. But every member of the community seems to feel strongly committed to and appreciative of the community . In a sentence, it was evident that most everyone, doctors, patients (2000 of them), therapists, workers (and even the rotation of students) truly care about each other and about the inspiring mission of this humble facility.

As Pedro drove me back to the hotel I coaxed him to tell me more of his well-grounded ideals and servant-hearted approach to medicine. I felt refreshed and encouraged by him. It was clear that not all the medical profession (and hopefully not all in the legal profession either) are self-absorbed. There are clearly some who wish to redefine their calling from being a "helping oneself profession" to a "helping others profession".

It is passion-driven professionals, like Daniela and Pedro, as well as other members of "Friends", who must continue to be encouraged to come to World Parkinson Congress 2013 in Montréal. It is by sharing their story that it can be repeated and even refined by communities of "Friends" all over the economically challenged globe. In this way we can not only share each other's tears and sense of loss, but empower each other to grapple effectively with the disease that would otherwise define us. As Agustin wrote in an e-mail thanking me, we "have an island country..., but now we know that an island and other islands form an archipelago and that this can become a continent, which in our case is to achieve a better life and improvement for all of us, remember that we must be realistic, we must ask the impossible".