I am a Writer for ‘Parkinson’s Road’ global support community.
Meeting people that you know online, in-person for the first time, can be quite daunting. Many people will be used to this scenario either through work or through online dating. Last weekend, I was excited to be going out to a special event. As my regular readers will know, I am one of a team of people who runs an online support group on Facebook, called Parkinson’s Road. This is a support group for people with Parkinson’s and also for caregivers. We are a team of volunteers and we are called ‘Admins’; the term given by Facebook to people who run groups through their platform.
There are four of us Admins in England, three in the United States and two in Canada. We have become firm friends. We are in contact with each other through every day and often into the night and, as anyone who runs any type of support group will know, the role of an Admin is intense and demanding but also incredibly uplifting. Given the distance between all of the Admins, the English/UK contingent decided to meet up. We are no more than about three hours apart from each other. We decided to meet in Norwich, so that we could also meet the mother of one of our team; a wonderful woman called Shelley who bravely shares much about her life with Parkinson’s, within our community.
Sadly, one of us four here in the UK could not attend on the day, so the remaining three of us decided to go ahead and meet. It was exciting to imagine meeting Tracy White and Charlie Lou Edwards in person. We had been through a lot together, in our roles, and to each other we are either usually just a photo image on the screen of a phone or computer or, at best, an occasional video image online. Seeing them in-person would be both lovely and interesting. We had with us a photo-bunting of the Admins who could not join us in-person, to show they were ‘with us in spirit’.
What turned out to be wonderful was that from the minute I saw Tracy, and her husband, sitting at the hotel table in the sunshine, as we arrived, it just felt like arriving to spend time with an old friend. There were hugs and more hugs as Charlie Lou and her mum next arrived and we, along with my other half, spent the next few hours chatting, laughing and enjoying lunch.
One of the key elements of Parkinson’s Road is our ‘live shows’. Quite a few of us now hit the ‘go live’ button on Facebook for the many scheduled shows we present. We sit and chat with somebody who has agreed to be a guest with whichever of us is hosting and, while we are broadcasting, our wide membership can comment on screen and we can talk back in response to those comments; thereby including our viewers. This is similar to a radio show that has people calling in to speak with host and guest. It’s nerve-wracking but fun and it helps our members; judging by the wonderful feedback we receive on a regular basis.
We decided to make our team meet an inclusive event and so we surprised our members on Parkinson’s Road by broadcasting live on video. Two of our fellow Admins; Tanya Lestrange in Canada and Pam Yeager Roper in the United States, each came live online with us and so we were, in some small way, able to share our event with a couple of our far flung friends. We were joined by quite a few of our group members who offered wonderful comments and questions. This meant we were able to share this lovely occasion with people across the world and make it a celebration of our meeting.
Needless to say, our aim is to eventually find a way for all of the Admin Team to be together. If we can achieve that just once, it would be quite something but, for now, we will at least hope that occasionally one or two of us will travel across the Atlantic Ocean and be able to meet.
An important next step for us is to see if we can encourage our members, around the world, to meet up and have fun gatherings to celebrate our community that is Parkinson’s Road. We are hopeful that many people will be able to arrange to meet members of the Admin Team, individually and locally, too. Watch this space for further updates as we set about making that happen.
For now, I will end this post with a lovely video that Tracy created to celebrate the wonderful day that we spent together in Norwich, Norfolk.
(C) Dean Parsons. May 2018.