Six quotes to live by, from the Parkinson’s Life podcast guests
Author: Johanna Stiefler JohnsonPublished: 2 December 2021
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The Parkinson’s Life podcast has just won gold at this year’s International Content Marketing Awards, beating stiff competition to come in first in the ‘Best Branded Podcast’ category. To celebrate, we share six of the most valuable insights our guests have shared over two series
When we launched a podcast in 2019, our goal was to tackle the stories that matter to people with Parkinson’s disease – sharing varied perspectives on life, offering useful tips and resources to listeners and putting the voices of people with the condition at the front and centre.
Two years later, the podcast has just struck gold once again, earning the top spot for ‘Best Branded Podcast’ at the prestigious International Content Marketing Awards 2021. Announcing the award in a virtual ceremony, judge Trygve Tønnessen, senior creative at Geelmuyden Kiese, congratulated the team on a “great podcast about a very important topic”.
Of course, this would have been impossible without the guests who have been willing to share their stories with us. Their contributions have helped to spark conversations on everything from fitness and food, to sex and relationships, to parenting and the pandemic – with many laughs, touching moments and connections made along the way.
The Parkinson’s Life team hope this achievement will help to raise awareness of the important stories that people in the Parkinson’s community have to tell – and the advice they can offer to others with the condition.
Take a look at some our guests’ top tips and useful insights on living with Parkinson’s.
“Be real about what you can do on any given day. Life is going to change, but you’ll move forward”
When Canada-based broadcaster Larry Gifford and American blogger Allison Toepperwein discussed parenting with Parkinson’s, they opened up about some of the challenges they’ve faced – from managing symptoms through childcare, to trying to explain their condition to young kids.
“Be real about what you can do on any given day,” said Larry, reflecting on his own experiences. “Life is going to change, but you’ll move forward.”
Allison added: “Move while you can, do as much with your kids, for your kids, as you can. And build these amazing memories of quality time.”
“Diet is one of the missing pieces of the puzzle in terms of helping people live with Parkinson’s better”
After she was diagnosed with Parkinson’s, Ireland-based dietician Richelle Flanagan was disappointed by the lack of information available about how to eat well with the condition.
US celebrity chef Zarela Martinez, who joined her in an episode dedicated to cooking and eating agreed: “In my whole [experience of] Parkinson’s, nobody’s ever talked to me about nutrition.”
The two shared their tips on enjoying time spent in the kitchen, cooking delicious meals – and maintaining a diet that can help to make Parkinson’s more manageable. “I think it’s one of the missing pieces of the puzzle in terms of helping people live with Parkinson’s better,” said Richelle.
“One year is not enough to change the world. But we can change us”
Four people with Parkinson’s from around the world came together virtually to explore how life has changed during the pandemic – and the lessons they’ll be taking forward, in a podcast episode sponsored by Kyowa Kirin International.
Sharing their unique experiences of Covid-19, they discussed the challenges they’d faced – but also acknowledged some of the positives that have come from a difficult time, including developments in technology and new connections made online.
For Dr Maren Neumann-Aukthun, a former veterinarian based in Germany, innovations that emerged during the pandemic have offered hope for the future of Parkinson’s care. “One year is not enough to change the world,” she said. “But we can change us… and so that makes me happy and optimistic.”
In an episode exploring the link between Parkinson’s and sleep disturbance, advanced nurse practitioner Brian Magennis caught up with married couple Cormac and Mary Mehigan – whose sleep had been disrupted by Cormac’s condition.
The trio discussed how Parkinson’s can impact sleep, from insomnia to vivid dreams; the steps worth taking to improve shuteye, including fewer daytime naps; and the invaluable role sleep plays in managing Parkinson’s symptoms. “The day after a good night’s sleep,” said Cormac, “I’m buzzing. It makes such a difference.”
Brian, whose father has Parkinson’s, agreed: “When people have a good night’s sleep, they’re actually much better from a motor point of view.”
“It’s really important to try and ensure that you are in control of your Parkinson’s, rather than your Parkinson’s being in control of you”
Life with Parkinson’s disease can pose many challenges – but after 20 years with the condition, Colin Cheesman is still new finding ways to stay positive. Talking about what it’s like to live with ‘advanced’ Parkinson’s in an episode sponsored by Britannia Pharmaceuticals, Colin and consultant geriatrician Dr Nishantha Silva discussed what changes can be expected as the condition progresses – and how to manage them.
Inspired by Colin’s “inspirational” attitude – which saw him learn to rollerblade at the age of 70 – Nishantha shared his advice for people with Parkinson’s: “There are many things you can do. It’s never too late to develop new hobbies, and new personal connections and to do different things.”
Colin explained that his positive outlook is crucial to managing the condition. “It’s really important to try and ensure that you are in control of your Parkinson’s, rather than your Parkinson’s being in control of you,” he said. “I think once you let the condition lead where you go, you lose a degree of independent decision-making. So you’ve got to try and get your head round – with all the support there is – what the possibilities are.”
From delayed diagnosis, to feeling out-of-place in the community, to experiencing challenges with medication during menstruation – the guests agreed on the importance of addressing the gender gap in Parkinson’s research.
Sharing her advice to others experiencing similar difficulties, Mariette Robijn – who joined fellow bloggers Omotola Thomas and Sharon Krischer on the podcast – said: “Just remember, Parkinson’s is a big thing, but life for me is bigger than Parkinson’s.”
This podcast is brought to you by Parkinson’s Life, an online lifestyle magazine for the global Parkinson’s community, and supported by the European Parkinson’s Disease Association (EPDA), the leading voice for Parkinson’s in Europe.
How has the Parkinson’s disease community been impacted by Covid-19?
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A “revolutionary” step in stem cell therapy for Parkinson’s disease?
Scientists in China have developed a method to help improve stem cell research in mice models of Parkinson’s – which could potentially lead to promising new treatments. The researchers, based at the Chinese Academy of Sciences, identified two cell surface markers of dopamine neurons, which are reduced in Parkinson’s. They injected cells with these markers into the brains of the mice and found that this resulted in “higher therapeutic potency” for improving motor symptoms of the condition. As part of their research, the team also worked to control the variability of donor cells, to help improve therapeutic outcomes for Parkinson’s cell therapy. The researchers, whose study was published in ‘The Journal of Clinical Investigation’, described the findings as a “revolutionary step on the road towards more effective and safer stem cell therapies”.
Could frequent nightmares be an early sign of Parkinson’s disease?
A new study has suggested that experiencing recurrent nightmares and bad dreams could be an early symptom of Parkinson’s disease. Researchers from the University of Birmingham, UK, used data from an existing US study that followed 3818 men, aged 67 or older, over a period of 12 years. Participants who reported experiencing bad dreams at least once a week were followed up. During the follow up, 91 people were diagnosed with Parkinson’s. The results suggested that participants who had frequent bad dreams were twice as likely to develop the condition as those who did not. Commenting on the study, lead author Dr Abidemi Otaiku said: “While we need to carry out further research, identifying the significance of bad dreams and nightmares could indicate that individuals who experience changes to their dreams in older age – without any obvious trigger – should seek medical advice.”
More than £2m awarded to research on mitochondria and Parkinson’s disease
Researchers at UK biotech startup NRG Therapeutics are developing potential treatments that may help slow the progression of Parkinson’s by protecting the mitochondria – a part of every human cell that works to power chemical reactions. The company has now received a £2.68m award from government-backed agency Innovate UK to continue its research. Their research built upon previous findings that damage to mitochondria in the substantia nigra – an area of the brain associated with dopamine – may be linked to Parkinson’s. The scientists developed molecules that keep a ‘pore’ in the mitochondria closed, which stops calcium flowing into it, preventing a process that eventually ruptures the powerhouse of the cell and leads to its death. The new funding award follows previous investment from Parkinson’s UK and the Michael J Fox Foundation.