Parkinson’s causes a host of troubling, difficult, and downright awful symptoms that worsen over time. Living well with Parkinson’s is dependent on a variety of factors. As the disease inevitably progresses some People with Parkinson’s (PwP) choose to live with a purpose. When five relative strangers from all over the country convened in Oaxaca Mexico this past week it was only made possible because of their strong common purpose to help PwP there. When Gavin Mogan, Nathan Lee Ward, Russel Parker, Laura Olmos, and Eric Slominski (me) met in Oaxaca this past week, it was proof that wonderful and surprising things can happen when one decides to stop worrying and start living…with a purpose.
While the rugged terrain surrounding Oaxaca has helped to preserve the cultural heritage of the area, it seems that the isolation has also tended to slow the latest treatments from reaching Parkinson’s sufferers in the city. When we visited a local Parkinson’s support organization to offer assistance people living with Parkinson’s disease, I think we were all a little surprised, and a lot energized by how they brought so much liveliness to the small establishment near the city center the small group uses as it’s meeting place. The founder of the Parkinson’s support center Sandra Bartolano, who herself suffers from Parkinson’s has done an amazing job of creating a refuge where Parkinson’s sufferers can gain knowledge on how to live better with Parkinson’s all while enjoying the benefits of mingling with fellow PwP. The programs that Sandra’s center provides include interacting with key Neurologists and other doctors in the area, as well as plenty of intermittent uplifting music and dance throughout . During our short stay there we were able to offer group and individual sessions on techniques for improving basic movements. Their outpouring of gratitude for our presence was powerfully energizing for our everyone in our group.
The experience we had there was at least if not more beneficial for us than it was for them. Among the many things I learned this past week are the following two takeaways…Slow down and…Move more
Slow down – On our first morning of attending the programs put on by our hosts, I found myself constantly wondering when the programs were just going to get started all ready. The schedule built in a lot of time for music and dancing, with ample time for lunch and just hanging around. In fact, it seemed that the culture there was just less rushed and seemed less stressed overall. Unlike in any city in America, hold-ups in traffic due to pedestrian crossings or other blockages were usually met with polite waiting, instead of a cacophony of horns blowing. By the end of the week, I felt calmer and less stressed in part due to living less rushed and thus less stressed. Since less stress directly correlates to better symptom control by PwP, I knew I would soon miss that slower pace of life when I left Oaxaca.
Move more – It always kills me to say this…it just feels weird. But it’s so true, nonetheless. I forget how to walk if I don’t walk enough. Parkinson’s sucks like that. I’ve been so busy in my personal life that I just haven’t really had time to walk anywhere. I rush all over the place in the car because I either just don’t have time to walk or it’s just impossible to do so. When I finally do get a chance to walk I struggle terribly. This past week I was forced to walk…a lot. The city is just made that way. The first couple of days I had a really hard time. But by the end of the week I was moving along walking great. Speaking of moving more, music and dancing is a big part of the culture to the people in Oaxaca. Guess what? Dancing is great for people with Parkinson’s.
As great as Sandra’s program is, I did not notice many Young Onset PwP. It made me wonder where they were. Being Young-Onset myself, I’m particularly sensitive to the struggles of People with Parkinson’s who grapple with this disease while still having the responsibilities of a younger person. Are they in hiding due to stigma? Are they among the numerous homeless folks trying to eek out a living by begging for handouts? I just don’t know. Maybe something we help address in a future visit?
To wrap this up, I’ll say a few words on the members of our small group. Each of whom I had the great pleasure of getting to know better during our short time in Oaxaca. I have a sense that this past weeks event will not have been the last time I see these folks. I certainly hope to see them again in the near future!
I was initially drawn to Gavin by his, at-first seemingly outlandish ideas about Parkinson’s disease. Ideas such as he’s already found the cure: not needing a cure; and other ideas that seem strange at first but actually make a lot of sense. His ideas also tend to give those PwP who will listen hope and sense of empowerment over an otherwise uncontrollable and ruthless disease.. His philanthropic nature coupled with his ideas of drawing energy through service of others is really what made this event possible in the first place. It was Gavin’s work that paved the way for our time in Oaxaca. I’m so Glad that Gavin is as passionate as he is!
Nathan Lee Ward
The more I get to know Nathan, the more I like the guy. He’s relatively young but is a wealth of knowledge and talent. Thanks to being diagnosed in his 20s with Parkinson’s along with a variety of other related misfortunes. He draws from a vast amount of life experiences that really gives him some amazing insights and purpose in life. His knack for helping others this week was readily apparent as he put his numerous skills to work teaching PwP in the area how to move and live better. Nathan humbly claims that he still has much to learn (don’t we all) while he wowed us all with his Karate skills. Skills that he uses to move and live better with Pd, and happily shares with any Parky who will listen (Nathan is a Blackbelt in Karate). To top it off, he plays the guitar and has a great singing voice. Skills he used this week to help set the tone for a week of Parky’s passionately living well together.
If Gavin’s idea was to take on the work down in Oaxaca, Laura was the engine to make it go. Laura did all the translating for us and literally kept us from dying penniless in the street. Laura was amazingly on-point with everything from demonstrating exercises, to bridging the language battier, to making sure were all fed (and didn’t pay too much for it). Laura a PwP herself, feels a powerful connection with her fellow PwP and was eager to spend as much time as possible with us during the week. She facilitated and took part in any and all activities during our stay down in Oaxaca. Truly an incredible individual!
Russ is an extremely likable guy. He’s fun and caring and he likes to use dance to combat Parkinson’s. As the people of Oaxaca are lovers of music and dance, Russ’s moves were an instant hit with them (especially the ladies). Russ brings many years of experience working as a personal trainer. He has a seemingly endless supply of helpful advice for PwP (or anyone for that matter).