Loneliness is not uncommon in people with Parkinson’s, and feelings of social isolation may have been exacerbated by the pandemic. Certain activities, such as regular phone calls with friends or exercise classes, may help to combat feelings of isolation, improve wellbeing – and could even make a positive difference for Parkinson’s symptoms.
Podcast: Parkinson’s and loneliness
Author: Johanna Stiefler JohnsonPublished: 22 July 2021
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The latest episode of the Parkinson’s Life podcast brings together neurologist Dr Indu Subramanian and retired lobbyist Wytze Russchen, who has lived with Parkinson’s disease since 2008, to discuss how loneliness can affect people with the condition – and how to counter feelings of isolation
Parkinson’s can be socially isolating for a number of reasons – ranging from symptom-related stigmas to loss of social networks. Wytze Russchen began to realise this after he was diagnosed with the condition in 2008.
“When I had to stop working,” says Wytze, who was a lobbyist in Brussels, Belgium, at the time of his diagnosis, “the first thing that you lose is your professional network. You have to discover a completely new network.”
Building and maintaining social networks is not always easy, he adds. “I found, and I still find, it’s difficult to explain what I’m going through on a daily basis to people who do not have Parkinson’s … even to family members or friends who you think you know very well. It’s still very hard to explain, for example, mood swings.”
Difficulty connecting with others can have a huge impact on mental health and feelings of loneliness. This can correspond with more severe symptoms, according to research conducted by US-based neurologist Dr Indu Subramanian, who joins Wytze in the latest episode of the Parkinson’s Life podcast.
“It’s been a very rough year,” she says. “Even the physical connection of seeing patients has been absent – being able to smile or hold somebody’s hand or hug, which is a huge part of the pleasure of my job.”
Small steps to combat isolation
Indu’s research into the impact of loneliness on Parkinson’s symptoms has emphasised the importance of social connection for people with the condition – something Wytze has experienced himself, explaining that he’s found certain aspects of the pandemic “very hard”.
He was able to cope with isolation during the pandemic by making small efforts to “socially engage” – such as “walking the dog, seeing the physiotherapist twice a week, having chats with my friends”.
Indu says these small but “commendable” efforts may be enough to combat the loneliness that can affect people with Parkinson’s.
“Even if it’s small snippets of socialisation,” she says, “if it’s talking to the [staff] wherever you get a coffee, or the mailman, or your neighbour, or somebody in the grocery store – I think it can make a huge difference.
“The principles resonate no matter who you are and where you are – the need for having human connection, and taking charge of the things you do every day so you can feel that you are driving the bus with Parkinson’s.”
This podcast has been supported by a grant from the Boston Scientific Foundation Europe, whose mission is to improve patient wellbeing, using digital or innovative solutions.
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