International Women’s Day: “Everyone benefits from raising awareness”
Women and Parkinson's
Author: Sarah McGrathPublished: 2 March 2023
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Around three million women worldwide are living with Parkinson’s – but their specific needs and experiences are often neglected. Ahead of International Women’s Day 2023, we look back at our #WomenAndParkinsons campaign – where interviewees share how the condition has impacted their lives
We launched the #WomenAndParkinsons campaign in 2019 to highlight the knowledge gap around how Parkinson’s affects women. Investigating the topic revealed some shocking insights. Women experience a more rapid disease progression, a lower survival rate, are less likely to be monitored by a movement disorders specialist – and are less likely than men to undergo complex treatments like deep brain stimulation.
At the start of the campaign, Russell Patten, director general of Parkinson’s Europe, said: “This campaign is necessary if women living with Parkinson’s are to receive what they, and everyone living with Parkinson’s, deserve: an appropriate diagnosis, improved treatment options and a better quality of life.”
More than two years later, we’ve been lucky to speak to women in the community about a variety of subjects including diagnosis, menopause, medication and research.
When Ingrid Roesner was diagnosed with Parkinson’s at the age of 57, she said it was “a relief not to have a brain tumour or a stroke, but a shock to be told I had an ‘old person’s disease’”.
Since then, Ingrid has worked to prioritise how she communicates with others – whether it’s been writing down her experiences, creating drawings, or making graphs and reports to clearly communicate her needs when meeting with healthcare professionals.
For Ingrid, strong communication is essential for managing the condition: “It allows you to learn from others and motivate each other, and it enables you to show your strength.”
At the age of 33, Caitlin Nagy refused, at first, to accept her Parkinson’s diagnosis. She recalls how she struggled with insecurity throughout the following years, which ultimately prompted her to set a goal for herself to “prove to myself that I still love my body”. She challenged herself to participate in a boudoir photoshoot.
Caitlin credits the photoshoot for helping her improve her self-confidence. “It’s created such a huge shift in me in terms of accepting my body and loving it for the way it is,” she says. “Before, when I was asked about my condition, I would go into defence mode. But now I’m comfortable saying: ‘I have Parkinson’s – and this is what it looks like’.”
UK-based Pam Archer was diagnosed with the condition during Parkinson’s Awareness Week. When researching information about women and Parkinson’s, she says that few resources focused on how older women coped with the condition – making her feel “invisible”.
Pam shares the importance of highlighting older women’s experiences and tackling questions around how Parkinson’s affects them differently. As she notes: “When it comes to older people being diagnosed with Parkinson’s, it seems to be only about older people – which we are. But even older women aren’t just variants of men.”
Ireland-based dietician Richelle Flanagan hid her Parkinson’s diagnosis for two years, for “fear of judgment”. But after meeting other people with the condition and visiting the World Parkinson Congress in 2019, she felt motivated to share her story.
Making people aware of the impact the condition has on women was particularly important to Richelle. So far she has set up a survey about hormones and women’s Parkinson’s symptoms, and co-founded the Women’s Parkinson’s Project to help advocate for better treatment and research for women living with the condition. After all, Richelle says, “everyone benefits from raising awareness”.
Series one of Parkinson’s Life podcast saw campaigners Sharon Krischer, Omotola Thomas and Mariette Robijn get together, discussing topics that ranged from the stereotype that people with Parkinson’s tend to be “old, grey, dusty men”, to the discovery that symptoms “will be worse during your period”. The group noted that being better informed about Parkinson’s during their diagnosis “would have made a difference” to their experiences of the condition.
When Cathy Molohan was first diagnosed with Parkinson’s, she was “determined” not to let the condition stop her role co-running the communications company EnglishBusiness.
Although Parkinson’s symptoms meant parts of the work became “exhausting”, Cathy was grateful to her “amazing” colleagues and clients for their support. “It was a hard balancing act to look after myself and my business commitments at the same time,” she explains.
Cathy eventually decided to leave her job to focus on spending time with her family. “It’s essential to create a workplace where chronic illness is not a taboo,” she says. “I think many women try and be everything and do everything – Parkinson’s just doesn’t allow that. Or at least, it forces you to choose what and how much you do.”
At the age of 37, a Parkinson’s diagnosis left María Martinez* with a “monumental” identity crisis. She initially struggled, as she left her job as a journalist and grappled with impulsive behaviours linked to her Parkinson’s medication. But after having psychological therapy at a specialised centre for women, María began to accept the condition and put her life in place.
“Women have to learn to be their own highest priority in life,” she says. “We have to learn to say ‘me first’, we have to learn to say ‘no’ on our own, without the consent of the group. We have to learn to be impervious to social judgment – even more so if health is at stake.”
It is estimated that three million women worldwide are living with Parkinson’s – yet their specific needs and experiences are often ignored, leading to disparities in diagnosis, treatment and medication. Our campaign shares the little-heard stories of women with the condition to find out how their lives are being affected by a shocking data gap when it comes to women and Parkinson’s. This is just the start.
We want to raise awareness of women’s experience of the condition within the medical profession, so that women’s symptoms are taken seriously.
We think more research is needed into the impact of Parkinson’s on women, so that they can benefit from tailored medication and treatment.
We want to explore ways to offer better support for those women managing the condition alongside caring responsibilities.
#WomenAndParkinsons shortlisted for ‘Charity Content Campaign of the Year’
Parkinson’s Life’s #WomenAndParkinsons campaign – a series highlighti
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