Podcasts and Parkinson's: Viv's story
Viv is carers’ chair at the Parkinson’s UK Kensington and Chelsea support group. Her husband Howard has Parkinson’s.
When the pandemic forced people to stay at home, the need to connect was more important than ever. This led Viv and her fellow group member Richard to create a podcast about Parkinson’s. Here Viv shares her story.
“When the pandemic hit, we were very concerned our group wouldn’t be able to meet up in-person, so relatively quickly, we started holding meetings over Zoom,” remembers Viv.
“It was an opportunity for people to connect with each other and online meetings continue today,” says Viv. “I’m so pleased we’ve managed to create a safe space. People can share their stories and talk. They may be tearful, but they are not embarrassed.
“I’m surprised how involved I’ve become with the group and even more surprised how much I get out of it personally,” admits Viv. “But I know it’s helping others and that’s why I do it.”
It was the need to connect that sparked the idea for a podcast. Richard, another member of the carers’ group, thought a podcast could be a helpful way of sharing the everyday experiences of people living with the condition, their family, friends and carers.
I’ve always been interested in people and people seem to find it easy to talk to me... Howard and I always think it’s funny when I get talking to a stranger and come away with their life story. We laugh and say, ‘And you get all of this from hello?!’
It's good to talk
With a natural flair for conversation, Richard asked Viv to interview people for the podcast and she jumped at the opportunity.
“I’ve always been interested in people and people seem to find it easy to talk to me,” admits Viv. “Howard and I always think it’s funny when I get talking to a stranger and come away with their life story. We laugh and say, ‘And you get all of this from hello?!’
“I’m also trained in relationship counselling so I understand how important communication and talking about things is, however uncomfortable it might be,” she explains.
Viv has since interviewed different people for the podcast including someone living with Parkinson’s, a Parkinson’s UK adviser and a physiotherapist.
“We record it all over Zoom and it’s just a chat really,” explains Viv. “The day before we record, I do have a call with the guest so I can make sure the right information will be drawn out in the interview. But still, it remains organic.”
The guest list often depends on who Viv has come across, but she looks for people who listeners will engage with and that they can trust. “I keep my mind open and will come across someone who I think might be interesting - basically anyone I feel can give a point of view, an insight or tips that may help people understand an issue better.”
I’m so interested in what the guests have to say. I’m learning so much about the condition. I love it.
A learning curve
For Viv, creating the podcasts themselves has been a massive learning curve. With the help of other people, Viv can now create a better audio experience for the listener, works with editors and can upload episodes onto the podcast's website and different streaming platforms.
But perhaps the most rewarding part of the experience is what she’s learning about Parkinson’s. “All these people are giving me detailed information about what they do. If they say something I already know, I think ‘Good, I’m doing it right!’
“It’s been good to get my gut feelings confirmed about how important exercise is for Parkinson’s, for example,” Viv says.
“I’m so interested in what the guests have to say. I’m learning so much about the condition. I love it.”
The whole point of the podcast is to make people with Parkinson’s, their family, friends and carers feel like they are not isolated or alone even if they don’t know anyone else with the condition.
Contributing
Howard has now had Parkinson’s for 10 years and Viv is especially aware of the challenges and limitations it can bring.
“Of course Parkinson’s impacts our life. I see Howard deteriorate and it breaks my heart,” she admits. “I’m a fast talker and can rush about, but from the podcast I now know I need to slow down in Howard’s company to get the best out of any situation. I have to pace myself and try not to plan too many things in a day. I really do have to be more patient.”
But the podcasts have been helping Howard too. “He is comforted by the fact that he is not alone in what he is experiencing,” says Viv. “He also feels that he is doing everything possible to keep the progress of Parkinson’s at bay.”
And it’s this drive to connect people that underpins the project. “The whole point of the podcast is to make people with Parkinson’s, their family, friends and carers feel like they are not isolated or alone even if they don’t know anyone else with the condition,” says Viv.
“Although people may come from a variety of backgrounds and their stories are different, the common theme is Parkinson’s, and people can identify with that.
“The podcasts make me feel that I’m doing something positive not only for Howard and me, but also for others,” says Viv. “I like to feel I’m contributing and I really do hope I am.”