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. In May 2018, my husband, Kevin and I were 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.
Back in May, 2018, we were a team of four Admins in England, three in the United States and two in Canada. We became firm friends. We are still 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, Norfolk, 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. This was Brendan; relatively new to the team but facing great difficulty with tremors and dyskinesia. 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 were usually just a photo image on the screen of a phone or computer. Sadly, due to personal commitments, Charlie Lou has since had to step down from her role but she remains a much loved friend and we hope to welcome her back in due course.
Here are some photos from our wonderful day:
What turned out to be truly wonderful was that from the minute I saw Tracy, and her husband Stephen, sitting at the hotel table in the sunshine as we arrived, it just felt like arriving to spend time with old friends. These two were utterly charming, friendly and they are both so supportive of the reason for Parkinson’s Road; to reach out to people who are struggling and who are potentially facing this disease alone and to reach out to other family members.
There is a true grace in people who are so kind. I was looking forward to getting to know them both. There were hugs and more hugs as Charlie Lou and her mum next arrived and we, along with my husband Kevin, 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 whomever 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. 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.
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. hi The team has changed a little, since back then. We now have eleven Admin’s. We are:
Together, we aim to provide support 24/7 and our membership has grown to well over 2000 members, thus far.
The exciting news is that, in November 2019, there will be a gathering in Nottingham, England. Here, any members of the group will be able to book in to join we UK Admin Team members for lunch and an afternoon of chat. I will post more about that event, in due course. This will be the first time we have held a gathering that includes our members. We are incredibly excited about it.
Parkinson’s Road has been life-changing for me and I know it has been for my colleagues. We have created something truly special and we have built a community of people from many continents of the world and across cultures. We are proud to serve and we gain so much from sharing the difficulties and challenges of life with Parkinson’s, with our members. Together, we have become a family of people who look out for each other.
We Admin’s are also delighted that many of our own family and friends have joined us to learn about what it is like to live with Parkinson’s, to gain insight and to achieve better understanding and this is invaluable, for life as a person with Parkinson’s is, as I have learnt myself, very challenging. Indeed, my husband, Kevin, and my cousin, Debbie, have gone on to become Admins in the team and I could not be more proud of them. This level of support from those closest to us makes life that bit easier and ensures that we all get to walk Parkinson’s Road, together.
Sharing the detail of what it is like to live with Parkinson’s is not about wallowing in self-pity. Instead, it is a celebration of fighting on for quality of life, well-being and hopefulness. Without the support of our loved ones and without the ability to share, the journey would be so much harder. It is our hope that we can also raise awareness in our communities and around the world, that we can reach those who are socially isolated and lonely and that we can teach each other how to face Parkinson’s in the best way we can each face it.
(C) Dean G. Parsons. 2019.