When you have Parkinson’s, navigating new relationships and social situations can be difficult. Between the debilitating and sometimes embarrassing symptoms, such as issues with speech and cognitive dysfunction, and the constant need for medications finding common ground with a new friend can be illusive. That’s why organizers of the World Parkinson Congress (WPC) 2013 launched the Buddies Program, an international social connection available to all registered participants of WPC.
The Buddies Program initiative aims to strengthen the Global Parkinson’s community by matching WPC registrants with Parkinson’s from abroad to Canadians with Parkinson’s disease who are attending Congress.
“People can become isolated. This can help them reach out to others with Parkinson’s. With the internet we can travel long distances in short times and communicate. Whether you have Young Onset or more advanced Parkinson’s you can meet up with a buddy you can relate to; someone of similar age and situation,” said Bill Sloan, WPC Buddy Program Administrator and a person with Parkinson’s.
About the Buddies Program
Once people with Parkinson’s sign up to attend WPC they will be prompted to engage in the optional Buddies Program. Attendees who opt into the program will be matched with other buddies from around the world. Even spouses are included in the program if they choose. Matched buddies are then free to communicate online leading up to WPC and hopefully beyond. Having a friendly face to greet participants in a new venue can reduce the anxiety and uncertainty of travelling away from home.
Program administrators think the Buddies Program, primarily for English speaking attendees, and the connection to someone with similar experiences will make the travelling and transition easier to handle.
“For those coming to Congress it will be wonderful to have a connection to look up when you get to Montreal. Being in a foreign place can be intimidating. Having somebody to meet makes it feel more like home,” said Marjie Zacks, Chair, WPC Global Communications Committee.
“Our attendees are curious. They want more knowledge about Parkinson’s. What better way to learn than directly from other people living with Parkinson’s,” added Louise LeBlanc, Coordinator of Volunteers for Parkinson Society Canada Central & Northern Ontario.
Organizers believe the long-distance relationships can provide a valuable service for those who get involved. And the benefits can extend beyond the four- day experience of the official event.
“It is difficult to be open about your Parkinson’s disease. It takes a lot of courage to share it with family and friends and the Buddies Program allows for a certain amount of discretion,” said Zacks.
“It may start with email. We’d love to see people use Skype or communicate online. It’s our hope that some long-term friendships come out of this. Some countries are more advanced with Parkinson’s research than others. Maintaining these relationships will keep communications and sharing of experiences going,” said LeBlanc.
The WPC brings together all stakeholders in the Parkinson’s community, including scientists, advocacy groups, and organizations like Parkinson Society Canada, and because the conference is set up by people who understand the Parkinson’s experience, the Buddies Program will enrich an already enlightening forum.
“The Buddy Program has given me the privilege and opportunity to meet a number of people living with Parkinson’s throughout the world. It gives me a sense of “belonging” hearing some of the stories of those inflicted with this Neurological Disorder. It is extremely rewarding matching up two or four individuals (couples) that I believe are a terrific fit,” said Sloan.
Sloan looks forward to meeting all his new “buddies” in Montreal and finding out about Parkinson’s experiences around the globe.
To date 52 matches have been made in the Buddies Program with 33 people ready to be paired.
Buddies Program Quick Facts
Here are some quick facts about WPC and the Buddies Program:
- Participation is available to all registered World Parkinson Congress attendees but is not mandatory
- Participants will complete a short online survey to capture relevant information such as age, gender, stage of Parkinson’s, year of diagnosis, language preferences and personal interest to ensure the most appropriate match
- Spouses and care partners can participate. Some couples have already been matched with other couples
- Buddies will have special benefits at the WPC in Montreal including a relaxation room