Ask the experts: Women and Parkinson’s
Three experts discuss the big issues in the diagnosis and treatment of women’s Parkinson’s, and what needs to change.
Q: In your experience, how does gender affect people’s experience of Parkinson’s?
Louise Ebenezer, Clinical nurse specialist for Parkinson’s disease: Men and women tend to respond to the diagnosis very differently. Women show and share emotions more readily. Men can become more angry and hide their emotions.
Professor Michele Hu, Consultant Neurologist and Professor of Clinical Neuroscience: For every 3 men with Parkinson’s, there are 2 women. But the symptoms they present with are very different. Women are more likely to have non-motor symptoms (anxiety, pain, restless legs and so on), compared to men, who are more likely to have tremor and changes to their posture.
Dr Stamatina Iliodromiti, Professor of Obstetrics and Gynaecology: For me, women with Parkinson’s were invisible - they just weren’t turning up in my clinic in the numbers you’d expect. Being diagnosed with Parkinson’s is a big thing to deal with, so it’s not surprising that menopause symptoms perhaps aren’t a priority at that point. But the way I see it, menopause is a window of opportunity - we have the chance to help women to age more healthily.
Stamatina: "Please start the conversation if you can. The more we hear from people in the Parkinson’s community, the more researchers and healthcare professionals change the way they think."
Q: What specific challenges do women with Parkinson's face?
Louise: It can be difficult to distinguish between non-motor symptoms and menopausal symptoms, especially sleep, sweating and anxiety. As healthcare professionals we need to monitor how the symptoms respond to levodopa medication, to know whether they’re caused by medication ‘wearing off’. I recall a lady who sweated so much that her spectacles steamed up. But that was a menopausal symptom rather than Parkinson’s-related.
Stamatina: Some medications may need to be increased for people going through menopause. Gynaecological and urinary conditions, such as incontinence, can get worse with lack of oestrogen. But the right hormone treatment can prevent these symptoms getting worse.
Menopause will affect us all eventually, so we really need to know more about how it affects other conditions.
Michele: When symptoms are mistaken for menopause, women can feel as if they’ve been ‘fobbed off’ - they feel impostor syndrome or as if they’re responsible for their symptoms. And there’s so much we don’t know. If there is a link between falling oestrogen levels and Parkinson’s, does having been pregnant reduce your risk? What about breastfeeding?
Q: What advice do you have for women diagnosed with Parkinson's today?
Michele: Do whatever exercise you can three or four times a week - and include different types. Cardio and aerobic exercise are important, plus Pilates to help with balance. Then it really depends on your age. Younger women might need preconception counselling, or help tailoring their treatment around their monthly cycle. For women past menopause, talk to your GP about HRT, look after your bones and don’t be afraid to talk about your pelvic floor.
Stamatina: For younger women, keep a diary of your periods and symptoms, so we can identify any relationship between them. And after the menopause, ask to be referred to your local menopause clinic.
Louise: A symptom diary is so useful during menstruation, perimenopause and menopause. That way we have the data to discuss longer-acting medication which could prevent symptom fluctuations. I’d also encourage women to engage with Parkinson’s UK’s support groups. They’re a real hub for sharing information, friendship and positivity.
Louise: "There is no embarrassing question for the Parkinson’s nurse! Bring a list of questions to your Parkinson’s nurse so we can discuss the top 3 most problematic symptoms - that might be bladder problems, menstruation, or intercourse."
Michele: If you can, sign up for research. Women are underrepresented in clinical research, perhaps because they’re more likely to have caring responsibilities which make it difficult. But we need women in research so that we understand how women might react to it differently before it’s approved.
Q: What do you think Parkinson's in women will look like in 10 or 20 years?
Michele: We need specialist centres - at the moment women can be passed around a series of different specialists, but we need more collaboration between gynaecologists and Parkinson’s neurologists.
Stamatina: Firstly, I think we’ll see more awareness among healthcare professionals and people with Parkinson’s. I’d love to see a multi-disciplinary approach, bringing a team of healthcare professionals together: neurology, physiotherapy, psychological support and others, rather than all acting in isolation.
Louise: I’m hoping there will be female-only research so we have a much clearer picture of what Parkinson’s looks like for women. From there we could develop personalised medication plans specifically for women. And we’d have a better understanding of how body weight and composition affect how much medication should be prescribed.
Michele: "The standard dose of Parkinson’s drugs is based on a male body - you can imagine how that might affect a 50kg woman and 70kg man differently. We need to recognise different body types and be able to adjust the dose accordingly."
Stamatina: There’s never been a better time for this kind of research - wearable devices can help track symptoms in real time, and AI can analyse huge amounts of data. In my experience, women with Parkinson’s are very motivated to do what they can to improve their own lives, and for future generations too.