“Recognising gender difference is essential for Parkinson’s research”
Women and Parkinson's
Author: Marina PicilloPublished: 5 December 2019
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In the sixth in our Women and Parkinson’s series, Italian neurologist Marina Picillo shares her findings from studies focussing on gender differences in Parkinson’s, highlights the role cultural bias plays in the results – and reflects on how research into such differences is a relatively “new phenomenon”
I started working in Parkinson’s research when I was in medical school, and developed an interest in gender differences within the condition about six years ago. I began looking into how non-motor symptoms affect men and women differently – with one study revealing that despite women experiencing higher rates of anxiety, depression and panic attacks than men, they remain largely untreated. Men and women experience very different problems. Recognising that is essential for Parkinson’s research purposes – and to ensure better treatment for patients.
The acknowledgment of gender differences in the medical field is quite a new phenomenon – it only started about 30 years ago. It took a while until it filtered down into Parkinson’s research, and I think we are still a little bit behind compared to other research fields. This is probably because two thirds of people with Parkinson’s are men and so the data is dramatically driven by men. But the mentality is changing. The design of studies and the treatment of patients is slowly being given more thought as researchers, the media and the patients themselves call for change.
Diagnostic delays and dyskinesia
Throughout my research I have come across a number of issues that are specific to women. Women are more prone to developing dyskinesia – uncontrollable, involuntary movements that can be a side-effect of levodopa. Some data suggests this is because women have a lower body weight than men, and clinicians prescribe the same dose regardless. Our follow up studies aim to find out more about the metabolism rate of levodopa as we believe that will be different according to gender. If that’s the case, it could seriously impact the way clinicians prescribe the drug in the future.
There’s also the ‘diagnostic delay’ to consider. According to research, on average women are diagnosed a few years later than men. There are a few explanations for this. Parkinson’s is not only less frequent in women, but also appears later in women than men. This is because oestrogen, the primary female sex hormone, is thought to play a ‘protective role’ in the development of Parkinson’s.
Women also generally visit specialists later than men. This may be because they pay less attention to themselves and their health as caregivers. Generally they’re likely to be less involved with their own care – which is an important psychosocial aspect to think about.
I was recently involved in a study which showed that an active sex life improves motor and non-motor symptoms – and quality of life – in people with Parkinson’s, although the results actually only applied to men. This is due to two things. One, women were simply less represented in the study than men. And generally women are less willing to talk about sexual issues than men due to cultural bias.
Women as caregivers
The next topic I’d like to focus my research on is why women are less likely to undergo complex treatments like deep brain stimulation (DBS). It’s a paradox, since women experience worse motor and non-motor fluctuations and more disabling dyskinesia. I think cultural reasons are once more at play here. Generally, worldwide, women have a central role in caring for their families. When a woman is sick, or has to take time off, this impacts on the whole family and causes difficulties. I would like to find out more about why women feel like this, and why there is such a gap in the uptake of these beneficial treatments.
More widely, I would like to see more research into women with young onset Parkinson’s – particularly for those who might still be thinking about having children. There is very little research available on this subject currently.
Though there aren’t symptoms that are unique to women, there are certainly issues that are unique to women with Parkinson’s. There has been progress, and everything is changing – but we still have some way to go.
Need to know: Marina Picillo is a researcher at the Centre for Neurodegenerative Diseases at the University of Salerno, Italy and has authored over 40 research papers. She completed a clinical and research fellowship at the University of Toronto, Canada, where she worked with advanced treatments for Parkinson’s such as DBS.
Parkinson’s and research: the facts
Motor fluctuations, including levodopa-induced dyskinesia, are more common in women with Parkinson’s
Women with Parkinson’s experience a more rapid disease progression than men – and a lower survival rate
Women with Parkinson’s report higher rates of depression and anxiety than men
Women and Parkinson’s: Our campaign
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. Each week, we’ll be sharing 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.
Join us – #WomenAndParkinsons.
For more information on women and Parkinson’s please visit the EPDA website.
If you have a story to tell about being a woman with Parkinson’s – or some information about the impact of the condition on women for us to share with the global Parkinson’s community – please get in touch.
Why is it harder to cross obstacles when you have Parkinson’s disease?
A team of researchers at São Paulo State University, Brazil, have offered insights on why people with Parkinson’s disease can find it more difficult to cross obstacles than those without the condition. As part of the study, 13 people with Parkinson’s disease and 11 controls stepped over an obstacle 15 times, and scientists measured the distance between the foot and the obstacles during the step. They found that step-length synergy – the ability of the musculoskeletal system to adapt movement when encountering an obstacle – was 53% lower in people with the condition. “There are patients in our exercise group who fall three or four times a week,” said Fabio Augusto Barbieri, one of the study authors. “It’s important to understand how these patients’ gait and locomotion adapt while crossing obstacles so that we can improve step-length synergy.”
This April, The World Parkinson Coalition is launching The Parkinson Tulip Project – a global collaborative photography campaign to raise awareness of the world’s fastest growing neurological disease. As part of the campaign, which is supported by Supernus Pharmaceuticals, members of the Parkinson’s community are invited to share a photo of themselves with tulips – the official symbol of Parkinson’s disease. The project will run until April 2022, and all images shared by the community will be displayed at the sixth World Parkinson Congress in Barcelona, Spain. Additionally, every photo submitted will be entered into The Parkinson Tulip Project raffle. The World Parkinson Coalition hopes that the project will “give a face and name to those impacted by Parkinson’s” and “inspire the community, reminding people touched by Parkinson’s disease that they are not alone”.
Looking after dental health with Parkinson’s disease
Parkinson’s disease symptoms and medications can cause dental health problems – including difficulty cleaning teeth and increased tooth decay. Now, a study from researchers in Brazil has offered dental care recommendations to help people living with the condition. Analysing data from 14 studies, the scientists highlighted people with Parkinson’s can have “reduced quality of oral health and hygiene”. Their advice included routine teeth-brushing, as well as regular trips to a dentist. They also suggested brushing teeth with both hands, as symptoms like tremor and rigidity could mean using one hand is more difficult. The researchers wrote: “Although oral diseases are largely preventable, they are among the most prevalent diseases globally, thus creating a public health problem. “Despite the relatively low level of evidence in studies on oral health among patients with Parkinson’s disease, the data retrieved for this systematic review allowed us to create a set of simple guidelines.”