I attended the Montreal event in 2013 and will be participating in the one in 4th World Parkinson Congress 2016. I invite you to do the same. You will not be disappointed.
Personally, the 3rd World Congress was a changing experience. What made it generative was its combination of high caliber workshops, cultural events, sessions to relax and renew, as well as the ample occasions for face to face interactions with other participant. In my case, these experiences, as they accumulated, coalesced into new insights which expanded and intensified my work as PD advocate.
- I recall entering the Convention Hall. My wife and care partner accompanied me. Hundreds of people from sixty plus nations seized our attention: Persons with Parkinson’s (PwP’s), care partners, physicians, scientists, policy-makers, health professionals. Everyone sharing the same goal, how to best cope, care or cure PD. Their conversations were clearly animated. The air was festive. “Wow, this is indeed a global community”, I commented. “Yes”, my wife added, “ and, we are in it. It is our community.”
- As we scanned the hall, our attention shifted and rested on the PwP’s, folks who “walked funny”, like me. Those who struggled with poor balance, unsteady gait; shuffled, froze, relied on canes, trekking poles, and wheel chairs or were assisted by their partners. Many of them we could recognize from seeing them early in the streets and congress hotels. We noticed a shift. Outside the congress hall, their walking had impressed us as labored, unsure. Here in the hall, amidst hundred of other PwP’s with similar movement disorders they seemed to ambulate with greater confidence and even pride. My own body confirmed this shift. I noticed that I too displaced with greater ease, lack of self-consciousness, embarrassment or shame. It was as if the presence of so many others like me normalized my world and empowered me. I too began to walk with pride.
- In one of the excellent sessions the presenter noted that PD was an emotionally and socially isolating disease. The assertion was not out of the ordinary. I had heard it before, but this time it resonated. I wanted to hear more. And I did. During one lunch break, by sheer serendipity, I met a fellow person with Parkinson’s. He was a in his early 70’s. He had been diagnosed with PD only six months earlier. We talked about our predominant symptoms. He disclosed that, secondary to PD, he struggled with excessive salivation, he drooled, which, in public, caused him great embarrassment and shame. He coped by avoiding situations where he had to eat or speak in public. He realized he was socially isolating and understood its consequences. Just the same, he asserted he would rather endure social isolation than tolerate social humiliation.
- My interests in PD related anxiety, in non-motor symptoms, peaked. I spoke to other PWP’s attending the congress (and later to others back in my town) and inquired about their experiences. They named several symptoms and social situations with the potential to embarrass and open the door to social and emotional isolation: excessive salivation and drooling, spilling food on account of tremors, unsteady gait, fumbling attempts to get money or credit cards out of a wallet at the check out line… the list went on. These experiences were deemed to be common but that folks did not talk about it because, ironically, it was embarrassing to talk about one’s embarrassment. Further, professionals appeared to neglect the topic as well.
The congress ended. Participants deemed it a thunderous success. I came back home no longer self-conscious about my gait or body posture but energized, unburdened and determined to deepen and expand my involvement in the PD community.
I dedicated more time and effort to blogging, focusing on issues, whether neglected or not, that impacted the quality of life and subjective wellbeing of PwP’s and their care partners. I already wrote, (in Spanish), for a PD newsletter that circulates in the US and in Latin America. I accepted an invitation by NWPF to write (in English) for their newsletter, an assignment I continue to do. I posted blogs on PD related embarrassment and shame, gratitude, care partnering, hope, spousal relationships, resilience, achieving goals and objectives, positive and negative emotions, pillars of wellbeing and other topics. I spoke to support groups and presented at symposia.
Succinctly stated, the 3rd World Parkinson’s Congress in 2013 not only informed my work as a person living with PD and as an advocate in the PD community, it transformed it!
I look forward to the 4th World Congress in Portland in September 2016! I hope you do too.
This post was originally published by its proprietor, the Northwest Parkinson’s Disease Foundation. It is reproduced here with their permission.