Podcast: What’s it like caring for someone with Parkinson’s?

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• Podcast roundup: conversations on the reality of Parkinson’s October 24, 2019 We roundup the Parkinson’s Life podcast series so far, where people with Parkinson’s come meet up to discuss the realities of living with the condition 1. What’s it like parenting with Parkinson’s? Launching our podcast series on the topic of parenting, we brought together two parents with Parkinson’s for a frank discussion on how the condition has impacted their family life. In…
• Podcast: What’s it like parenting with Parkinson’s? May 16, 2019 In the first episode of our new Parkinson’s Life podcast we were joined by two people living with Parkinson’s who are also parents: Larry Gifford and Allison Toepperwein. We report on their honest and open discussion about the impact of the condition on family life – and how to still find joy in parenting with Parkinson’s “I wish somebody who…
• How my husband’s Parkinson’s has ruined our sex life April 20, 2017 Carers have praised a woman’s “extraordinarily brave and honest” account – live on UK national radio – of how her husband’s Parkinson’s has made sex “unthinkable” Parkinson’s can have a significant impact on the intimate relations of those living with the condition and their partners. Sue, who has been married for 30 years, knows exactly what that’s like; she can no…
• Podcast: What’s it like managing your working life with Parkinson’s? July 18, 2019 In the third episode of our Parkinson’s Life podcast series, Danish politician Elisabeth Ildal and Irish Parkinson’s advocate Gary Boyle share their honest experiences of navigating the workplace, from coming out the “Parkinson’s closet” to a “need to participate in life” Five months before being elected as a city council member in Denmark, Elisabeth Ildal was diagnosed with young onset…
• ‘Parkinson’s can tear couples apart’ May 23, 2019 From parenting with Parkinson’s to sharing a diagnosis with a partner, Parkinson’s campaigners Allison Toepperwein and Larry Gifford discuss the highs and lows of family life “Being a mum is tough. I think that’s because I am doing it on my own,” says US blogger Allison Toepperwein. Allison was diagnosed with Parkinson’s in 2014, five months after separating from her…
• “Sometimes, art can communicate what words cannot” January 16, 2019 A new monthly art series – which draws on the experiences of people with Parkinson’s and their carers – was launched by US biotech company Acorda Therapeutics last month as part of the Framing OFF Through Art initiative.   We spoke to Julie B., the artist behind the initiative’s first piece, about what motivated her to get involved, how art…
• Women and Parkinson’s: menstruation, medication and motherhood November 26, 2019 As part of our #WomenAndParkinsons campaign, episode five of our Parkinson’s Life podcast brings together three campaigners with the condition for a discussion of motherhood, monthly cycles – and how a gender gap in data has affected their diagnosis, treatment and everyday lives At least three million women worldwide live with Parkinson’s – yet their needs and experiences are often…
• Mother of schoolgirl who met Billy Connolly “blown away” by daughter’s selflessness November 29, 2018 The mother of a seven-year-old Parkinson’s campaigner – who was personally thanked by Sir Billy Connolly for her charity work – has spoken of her immense pride at her daughter’s campaigning The mother of a Scottish schoolgirl who met Sir Billy Connolly after raising money for Parkinson’s has said she is “blown away” by her daughter’s charity campaigning. After learning…
• Podcast: How do women experience Parkinson’s differently from men? November 21, 2019 In the fifth episode of our Parkinson’s Life podcast, we bring together three Parkinson’s campaigners to discuss the different challenges facing women with the condition. From waiting for years to be diagnosed to the prevailing image of people with Parkinson’s as “old, grey, dusty men”, their heartfelt conversation sheds light on how a gender gap in knowledge and research affects…
• Debate: are people with Parkinson’s “sick”? (Part Two) December 20, 2017 Last month we interviewed Alexander Reed – who has lived with Parkinson’s for almost a decade – about the European Parkinson Therapy Centre and his decision not to be defined as “sick.” The piece sparked a lot of debate amongst our readers. In the second of a two-part series, we hear from those who share Alexander’s approach to the condition…
• My Parkinson’s “has got nothing to do with God” November 28, 2019 We hear from Parkinson’s campaigner Hema Reilly (left) in Leicester, UK, on why she’s trying to educate the South Asian community about the condition – and tackle the misconception that Parkinson’s is a “curse” What were your first thoughts when you were diagnosed with Parkinson’s? When I was diagnosed three years ago at the age of 51, I did the…
• “I came home, spoke to my wife, and we cried together” October 18, 2018 Dean Cook, co-facilitator of The Hagerstown Parkinson’s Support Group, Maryland, US, discusses how he keeps his mind stimulated – from writing limericks to finding “an escape in fiction” – and how the support group has become a huge part of his life When were you first diagnosed with Parkinson’s?  I’m 68 years old and I was diagnosed with Parkinson’s about…
• Harry Styles is an “absolutely brilliant” carer for his granddad who has Parkinson’s April 27, 2017 Harry Styles’ mum has praised her son for caring for his grandfather who has Parkinson’s disease Harry Styles’ mum, Anne Twist, has praised her son as “absolutely brilliant” at caring for his 81-year-old grandfather, Brian Selley, who has Parkinson’s. Speaking at the Parkinson’s UK ‘SymFunny No.2’ fundraising event at London’s Royal Albert Hall last week, Anne revealed that former One…
• Podcast: How can you speak the same language as your healthcare professional? September 19, 2019 In the fourth episode of our Parkinson’s podcast, physiotherapist Josefa Domingos and her patient with Parkinson’s, Idelta Oliveira, join us from Lisbon, Portugal. In a heart-warming and informative conversation, they discuss how introducing a new Parkinson’s assessment tool into their appointments helped them communicate better, enhanced Idelta’s care – and brought them closer together Idelta Oliveira, who was diagnosed with…
• 10 Quotes to Help You When You’re Feeling Down July 13, 2017 We know dealing with a condition such as Parkinson’s disease can sometimes feel, both for the patients and the caregivers. You feel like you’re not doing enough or as if the disease is taking up all your time and attention. To help you on your journey, we’ve gathered a few quotes we thought might help pick you up during those moments when everything feels a bit bleak. MORE: How does…
• Watch: Michael J Fox Foundation pays tribute to Parkinson’s campaigner May 31, 2018 ‘Changing Course: Jimmy Choi’s Story’ is a short film produced by The Michael J Fox Foundation  The Michael J Fox Foundation has created a short film telling the emotive story of Parkinson’s campaigner Jimmy Choi. In the ten-minute video, Jimmy – who was diagnosed with young-onset Parkinson’s at the age of 27 – says he ignored the diagnosis for the first…
• STAGES: “an honest and human portrayal of Parkinson’s” November 7, 2019 Premiering last week in London’s busy West End, our reporters attended the premier of ‘STAGES’ – a Parkinson’s love story based on a series of true events – to meet the actors and production team behind the film exploring the condition and love “I’m sorry, I just wasn’t born to look after a cripple.” There was a collective gasp from the 100-strong…
• Women and Parkinson’s: ‘My medication only works three weeks out of four’ November 7, 2019 In the second in our Women and Parkinson’s series, UK advocate and blogger Omotola Thomas describes the impact menstruation has on her symptoms. From facing heightened emotions that go “way beyond normal PMS”, to struggling to get up and care for her family – her account sheds light on some of the unique challenges faced by women with Parkinson’s I…
• New survey highlights challenges facing Parkinson’s carers June 13, 2019 The EPDA is launching a survey that hopes to highlight the difficulties and consequences of caring for someone with Parkinson’s The European Parkinson’s Disease Association (EPDA) is releasing a new survey that seeks to shine a light on the physical, emotional and financial challenges of caring for someone with Parkinson’s. The survey, which is being conducted with support from healthcare…
• “I hope people take away hope and a smile from my blog” September 5, 2018 In the ninth in our series profiling the bloggers supporting the World Parkinson Congress 2019, we talk to Debbie Shapiro about why she started a non-profit organisation for the Parkinson’s community in Jerusalem, the challenges of finding time to blog – and why people shouldn’t ignore Parkinson’s Describe yourself in a sentence. I am a wife, mother, grandmother, great-grandmother and…