Women living with Parkinson’s have different experiences and symptoms than men.
Women are less likely to be diagnosed with Parkinson’s. However, they comprise over 40% of the Parkinson’s population.
Understanding women’s unique challenges
Several studies have highlighted the differences in how Parkinson’s affects women throughout their lifetime. For example, research has indicated that hormonal factors, such as oestrogen, may play a role in lowering the risk of PD for women (3). However, women are more likely to experience fluctuations in symptoms and side effects from medications, which can complicate their treatment (4).
A recent report published in Nature Medicine emphasised the importance of including more women in clinical trials and adopting a sex- and gender-informed approach to Parkinson’s research and care (5). This report highlighted the need for personalised care strategies that consider the unique challenges faced by women with Parkinson’s, such as faster progression of symptoms and a higher likelihood of experiencing depression and anxiety (5).
While significant strides have been made in understanding Parkinson’s, there is still much to learn about how it uniquely affects women. Continued research and targeted initiatives are essential to ensure that women with Parkinson’s receive the care and support they need.
Unfortunately, women have been largely neglected from research studies around how Parkinson’s affects their ability to have a baby or breastfeed, how hormonal changes affect their symptoms and the effectiveness of medication.
Women also may face unique changes to their social situations, including shifting roles in and out of the home, as well as self-esteem and body image issues.
How Parkinson’s symptoms are different in women
How Parkinson’s differs in women compared to men
In Australia, Parkinson’s affects slightly more men 52% than women 48% (Mellick 2024). Parkinson’s affects everyone differently, but women must also deal with pregnancy and breast-feeding, menstruation, and menopause, and potentially more issues with self-image, intimacy, and sexuality.
Parkinson’s tends to progress, or change, more slowly over time in women. Women also have more negative body image concerns, feeling less attractive due to their Parkinson’s.
Motor Symptoms
Women tend to have more tremors, dyskinesia (involuntary movement), restless legs and less facial expression (facial masking).
Non-motor Symptoms
Women may have less memory and thinking (cognitive) changes; hallucinations (seeing or hearing things that aren’t there); gut symptoms, like constipation; and sexual changes, like decreased libido or problems with orgasm.
However, they may have more mood changes, like anxiety, depression, and apathy; fatigue; sleep problems; pain and urinary symptoms, like urinary incontinence or urinary frequency (having to go more often).
Emotionally and socially, women may have less support, more stress and more self-reported disability.
They may also experience more negative self-image, loss of femininity, feelings of not being heard and less sexual intimacy. But our understanding of this is limited due to underreporting and less research (National Institutes of Health policies in the late 1980s encouraged research involvement of women and this later became regulation!).
Breast screening
Early detection and appropriate treatment can significantly improve breast cancer survival. Under BreastScreen Australia, Women over 40 can have a free mammogram every two years. When you make your breast screen appointment, book a time when you will be in your ‘on’ state from your meds. You can also ask for extra time due to tremors, slowness and dyskinesia. There is an option to be seated while the scan is conducted.
Best practice for those with DBS includes a scan of the non-implant side and an ultrasound of the side with the implant.
Some states are implementing ‘quiet clinics’ that cater for disability with longer appointments. Otherwise, make sure you let them know your needs and that you schedule your appointment when you are ‘on’ 45 minutes to an hour after taking your medication.
Periods, pregnancy & Parkinson’s
Periods & Parkinson’s
In one study, during the monthly cycle PD symptoms were often exaggerated, medication effectiveness reduced and ‘off times’ increased. Periods involved high levels of pain, fatigue and sometimes humiliating experiences when self-care was impossible. (Tolson et al. 2002)
We don’t understand exactly why symptoms worsen during menstrual cycles, particularly tremors, dyskinesia, and rigidity. Women also experience reduced effectiveness of their medications a few days before and during menstruation. There may also be increased PMS, emotional swings, apathy, fatigue, bleeding and period pain. Should your fine motor control be affected, look to period panties and other self-care aids for help.
If menstrual problems are severe, discuss management options and their side effects with your gynaecologist (e.g., ablation, hysterectomy, hormone therapy or radiotherapy).
Exercising more and being aware of ‘that’ time of the month and how your symptoms are affected can help you manage your expectations, medication and self-care.
Pregnancy & Parkinson’s
Because Parkinson’s is typically diagnosed later in life, there is not much data on pregnancy and Parkinson’s. In general, pregnancy for women with Parkinson’s is safe. If you’re thinking about getting pregnant, talk to your GP ahead of time.
This gives the opportunity to adjust medication before pregnancy. They may recommend taking folic acid to reduce the risk of birth defects. The biggest risk to the foetus is in the first few weeks, when many women might not yet know they’re pregnant.
There is a worsening of symptoms during pregnancy that may be related to many factors.
Possibilities include reducing or going off medications during pregnancy, medications may be harder to tolerate due to pregnancy-related nausea, higher doses may be needed for weight gain or exercise programs may change.
Stress makes Parkinson’s symptoms worse and there are often a lot of stresses on the body and daily routines during pregnancy. Changes to your body shape may influence balance. Slowness and fatigue may increase so allow more time to do things. Increased risk of constipation, urinary-problems and haemorrhoids.
Pregnancy requires close collaboration with your neurologist and your obstetrician.
Breastfeeding & Parkinson’s
As stated for many of these areas, there is little data on breastfeeding. In a published report of one patient with PD who breastfed while on levodopa, the baby’s levodopa levels were low. It’s always best to discuss with your personal physician, but there is data to suggest breastfeeding while on levodopa alone may be safe.
Menopause & Parkinson’s
Menopause and Parkinson’s
Every woman is affected by menopause in some way – either they experience symptoms or other physical changes. The average age of menopause is 51 years but you can enter menopause earlier.
Hormonal changes cause menopausal symptoms. Most women will have some symptoms and have symptoms for 5 to 10 years.
Parkinson’s symptoms, like fatigue, depression and increased sweating, can be amplified during menopause.
Menopause affects sexual desire and function. Quite often, these changes occur around the same time that Parkinson’s is diagnosed. For some, menopausal symptoms such as sweating can worsen symptoms.
Vaginal dryness is a common sign of perimenopause and menopause. A vaginal HRT may be more helpful than an ordinary lubricant, so speak to your GP.
Sleep issues are especially common during post-menopause, but problems sleeping are made worse by hot flashes and night sweats.
Changing hormone levels can affect your body clock and impact your ability to fall asleep and stay asleep.
You may choose to involve a gynaecologist or other women’s health professional on your care team. Have them liaise with your GP so that both conditions are treated effectively.
Hormone Replacement Therapy (HRT) can be helpful in some cases although research and evidence into its use with Parkinson’s is rather limited. In general, the benefits of estrogen replacement in women with Parkinson’s are supported by most published studies but need to be weighed against the general risks and benefits of HRT.
Where can I get help?
The Australasian Menopause Society https://www.menopause.org.au/
Pregspark.com focusses on pregnancies in YOPD women.
Call the national Parkinson’s infoline 1800 644 189 to be connected with your local state or territory’s Parkinson’s organisation. Many online groups exist for women only, and there are face-to-face women and Parkinson’s support groups around Australia.
References
Crispino, Pietro, et al. “Gender differences and quality of life in Parkinson’s disease.” International Journal of Environmental Research and Public Health 18.1 (2021): 198.
Mellick, G. (2024) Ecosystem of Parkinson’s in Australia
Shulman, L. M. (2007). Gender differences in Parkinson’s disease. Gender medicine, 4(1), 8-18.
Seier, M., & Hiller, A. (2017). Parkinson’s disease and pregnancy: an updated review. Parkinsonism & Related Disorders, 40, 11-17.
Tolson, D., Fleming, V., & Schartau, E. (2002). Coping with menstruation: understanding the needs of women with Parkinson’s disease. Journal of Advanced Nursing, 40(5), 513-521.
