Sometimes it takes a bit of searching to find out what is happening in the Parkinsonís Community; however, after searching on the Internet and finding a couple of addresses, I was well-armed to meet face-to-face with the Parkinsonís organizations I found in Buenos Aires. With addresses in hand, Chanda and I set off on our search. We figured the places would be identifiable offices, but both addresses led us to high-rise apartment buildings. I didnít have any names, only addresses, and I was speaking Spanish.
I began knocking on doors, and it didnít seem like anybody knew what I was talking about. In fact, I was even run off by an elderly lady. She couldnít understand why I was there, and she was not very willing to trust my good intentions. Was it my Spanish? Or was it the fact that I was asking, ďDoes anybody know if there is a Parkinsonís office here?Ē After several tries and a couple of taxi rides (I couldnít find phone numbers, just addresses) I managed to find someone who knew what I was talking about and who was able to lead me to Julia. Earlier when I stopped by her apartment, she was at a Parkinsonís support group meeting, which she attends every other Wednesday at a Catholic church in Buenos Aires. She has had Parkinsonís for 15 years and willingly answered all of my questions. She also invited me to their next meeting and informed me of the location and time.
Two weeks later....
I was nervous as I showed up to this meeting. First of all, my Spanish was not fluent, but mostly I was nervous about invading a support group. Who was I to walk in, not having Parkinsonís myself, and listen into their own private lives? My fears proved to be unfounded, as they welcomed me warmly into the group of about 12 individuals. They asked me quite a lot of questions, many of which I did could not answer. They asked me about the latest stem cell research, the causes of Parkinsonís, the existence of genetic links to the disease, and medication recommendations. Overwhelmed, I had no answers to these tough questions.
Later talk turned to other issues that were affecting their lives, such as how to secure cheaper medicine, how to support a member who was experiencing depression, and how to deal with some of the many side affects of their medication, such as sleep problems, nausea, and depression.
Parkinsonís affects nearly every aspect of life. More than 60,000 Argentines are battling this disease, and the majority of them do not have access to the medication they need. The group is working to support each other and raise public awareness about the disease. They hope to someday raise enough money to fund their own building so they will have their own place to put on festivals, raise money, have meetings, and dispense literature.
To find out more about ACEPAR