2 posts tagged “World Parkinson’s Congress”

World Parkinson’s Congress recap

Posted November 18th, 2013 by

Here at PatientsLikeMe, we always look forward to hopping on the road and visiting you, the members who generously share personal health journeys so everyone can learn to live better, together. Recently, Molly (she’s part of your Community Team), Brad and Jim (part of our Partner Marketing team) drove north to Montreal to attend the World Parkinson’s Congress with a few PatientsLikeMe members, and they wanted to take a quick second to report back on the experience. Check it out.
 


Off to MontrealThe World Parkinson’s Congress is designed to create a worldwide dialogue to expedite a treatment or cure for Parkinson’s Disease. It was amazing to see physicians and scientists, alongside health care professionals and nonprofits, connecting with patients and caregivers. It was a wonderful conference, and we were glad to be among the more than 3,300 participants who gathered in Montreal.

We couldn’t have picked a better setting than Old Montreal to meet with four of our Parkinson’s community members – Aunti_J, Sap011235, Sunshine221, and Red Hat Queen. They all attended the conference and joined us for a wonderful dinner at Chez L’Epicier. The cobblestone streets, gorgeous historic buildings and an unseasonably warm evening set the scene for exquisite French cuisine with new friends.

But the setting couldn’t hold a candle to the experience of meeting PatientsLikeMe members in person. After reading their forum posts, answering their questions, and hearing about their experiences with Parkinson’s for well over a year on the website, I was eager to give them a big hug in real life. We talked travel, DBS, support groups, community walks, and perhaps most poignantly, how and why each person joined PatientsLikeMe. Aunti_J left us with this touching memory of how she found PatientsLikeMe:

“I had to retire from my work about 2 years after I was diagnosed and I really felt like I was going home to die. I spent an entire year feeling so depressed. Then I found PatientsLikeMe and within a half an hour, I felt like this weight was lifted off my shoulders. I felt like I found ‘me’ again.”

Aunti_J joined in 2008 and continues to be a warm and welcoming voice in the community for all Parkinson’s patients who are sharing their journey at PatientsLikeMe.

The goodbyes came too quickly, the hugs were worth more than the distances we all traveled to get to them, and when we returned to our “real” communities at home, and to our virtual family on PatientsLikeMe, we carried with us the realization that we truly do live better, together.

PatientsLikeMe member MollyCotter


The Patient Voice | Episode 3: When a Community “Becomes Family”

Posted October 19th, 2010 by

“I’ve met a lot of people from all over the world,
we are all one happy family.” – Vigwig

Around and around we go, strap on in for Episode 3 of our podcast series, “The Patient Voice.”   To continue with the PatientsLikeMe Parkinson’s Disease (PD) quilt story, our guest today is community member VigWig. A few years back, VigWig underwent surgery for DBS (Deep Brain Stimulation). As word spread throughout the vigwigpatch3community, Vigwig’s online friends arranged for the quilt to be there waiting for him when he returned to his room from surgery.

Inspired by his Parkinson’s “family” (as he calls them), VigWig plays a more active role in the PatientsLikeMe PD community, and in raising awareness about PD. His story was published in the The Courier of Montgomery County, and VigWig submitted quilt patches to Parkinson’s Quilt Project (coordinated by the Parkinson’s Disease Foundation and displayed at the World Parkinson’s Congress). An honest-to-goodness story about an online “family” rallying together to support one of their own…here is our interview with VigWig.

PatientsLikeMe member afleishman