The Charco Blog

Social Media and Finding Your Community

We met with Emma Green to find out how she uses social media to find her place in the Parkinson’s community.

The benefits of social media

“I know that we’re all told not to go on our phones and not to scroll through things, but I found it really important in my life”, Emma tells us. She’s relaxing in her kitchen, talking to us over Zoom, but even through the internet her infectious optimism is clear. Social media has revolutionised the way we live and interact, and this is just as true for people like Emma in the Parkinson’s community. Groups such as the PD Avengers and Parkinson’s UK are among the most famous, but there are countless groups online around the world, specialising in everything from dancing, to fitness, to simply meeting up for a chat, all aimed toward those with Parkinson’s. Although social media has been so often dismissed as something negative, Emma has found a positive use.

Emma's Quote

“Social media for me is a tool to get in touch with people, rather than just keep it at a distance” she says, smiling. It’s an interesting take; rather than using social media for the endless stream of content that it offers, Emma has refocused her social media use to place people and community at its heart. Of course, this doesn’t stop her from enjoying all the other benefits that it provides! We asked Emma if she had a preferred platform, to which she emphatically nods. “Instagram is a bit better, because somebody who’s gone to the gym will show you a picture of how it helped them” she tells us. Searching for inspiration and constructive messages form a large part of her social media use. Emma is keen to tell us about Amanda Ellis, a woman she discovered on the internet, whose messages of positive thought she finds of great benefit. “She’s on YouTube and Instagram; I listen to her and it gives me so much, just makes me feel better.” Through careful curation of social media, she gives herself a daily dose of inspiration and optimism that helps to keep her as upbeat as she is when she meets us.

Emma with CUE1
Emma holding her CUE1

Nonetheless, she remains realistic. She agrees that, for some, social media can become a distraction, and may even begin to bring you down. She has excellent advice to those who may be wary of entering the online world; a simple reminder that you can remain in control of your social media usage. “You don’t have to be on social media all the time… I think you need to find out how it can help you or what you need.” She applies this to her own life. “I think if I can just try and concentrate on what I really need to see, then maybe I won’t get distracted so much.” Use it to your advantage, and keep your feed positive and focused only on what you want to see.

Finding her community

By curating her social media use and centring people, both herself and others, at the heart of her feed, Emma managed to tap into the support network for people with Parkinson’s in her area. She tells us how she “ended up reaching out, getting a group together and finding some local people”, and how surprised she was by just how many others like her lived nearby, saying “it’s amazing how many people with Parkinson’s in my area are of my age.” Emma went along to a meeting of one such group, eager to get to know others like herself, and soon met someone with whom she felt an instant connection. This woman opened Emma up to a whole new creative side of herself, which she’s quickly embraced. “She’s very into modern art, and has a big studio. I’m going along on Saturday, as she’s got an open mic. I actually wrote a poem for the first time in my life, but I don’t think I’ll have the courage to stand up and read it!” We’re excited to see where this new direction takes her, and wish her all the best in her poetic experiments!

Emma also used social media to find out about a rowing group in her area. She was, by her own admission, slightly nervous about enquiring, but eventually did so. She was excited by the response she got from the coordinator of the rowing group, who told Emma “when you row in a team, you adapt for everybody, everybody’s different”, and that “we make it work for us. You have to adapt if you’re in a team of eight, you adapt for everybody.” This spirit of inclusivity and acceptance, in which all the team members adapt to ensure that everyone is involved and happy, accommodating for everyone’s difference, was just the sort of thing Emma was looking for, and she couldn’t wait to join! There was, however, one drawback. “I’m going to have to get up at five in the morning every weekend, and I am not an early person. My husband said to me; ‘You realise you’re going to have to get up at the crack of dawn?’, and I said ‘Yeah, that’s fine!’” she tells us, laughing. “He’s looking at me, thinking ‘But you don’t get up until nine!’. But I think, ‘Yeah, but for that I would do it!’”

Zoom call with Emma
Emma calling Team Charco

The journey to community

“I’ve now used social media to get a group of people who live near me with my same condition who are now going to support me.” We asked Emma if she could share some of her tips and ideas for building a network and finding a community through social media, so that others could learn from her success and experience. She answered with the same straightforward, erudite, and positive tone which she carried throughout our interview. “Set your intentions, get what you want out of something, and then don’t get too intimidated or upset about anything else that goes around with it”, she tells us.

Emma also believes that this is something she’s had to learn in her own way. In particular, she’s had difficulties with finding the right type of group for her, initially visiting message boards which focused more on the difficult symptoms of Parkinson’s. “They’re reaching for people to either listen to them, or give them advice, and that’s not a place I want to be”, Emma tells us about the message boards in which people talk about their issues and symptoms. “I don’t know, I want to help people; I’ve always wanted to help others, but when it makes me feel low, I don’t feel I’m in a place where I can help.” Moving towards groups that have a specific focus such as an activity or hobby, rather than those just about Parkinson’s itself, has helped Emma become more confident in herself and in her outlook.

Emma’s view of her own Parkinson’s has undoubtedly informed her decision to join the communities she has. “I think Parkinson’s shouldn’t define me. I just think “I’ve got a condition”, and the condition has certain symptoms, and the symptoms I have may be different to somebody else’s.” She’s certainly succeeded in not letting it define her, as she’s trying new things and discovering new skills all the time.

Emma and CUE1
Emma using the CUE1

The Universe provides

“I think if we can encourage people to go on social media for certain reasons, to find like-minded people, I think it’s a brilliant tool.” Emma is an excellent example of the power of social media used for good; her journey to find a community has been an exciting one, and she hopes that others may follow suit, enjoying the benefits of social media and finding their own place where they feel comfortable and supported. We ask her if she has any final pieces of advice. How does she manage to stay so optimistic, so upbeat?

“I don’t think there is one answer. I think there’s lots of answers; I think it’s everything, really.” She reclines and grins. “I think the whole thing about life is, you have to get a balance in every little part, and when that happens, then the magic happens.” She seems to have these little parts well-balanced, a great illustration of the power of positive thought and an outgoing nature.

She leaves us with her wisdom still lingering, though one piece in particular sticks. “Certain energies bring certain people to you in your life, so I put out a question there to the universe” she tells us. Though she had to wait a while, she assures us that “the universe is answering me now, and it’s giving me exactly what I need. But I needed patience for it; it needed to come at the right time. I feel like life flows smoothly if you let it and stop fighting it.”