Women and Parkinson's Disease

Women account for approximately 40% of those living with Parkinson’s. Women with Parkinson’s Disease (PD) face unique challenges at every stage of life, but much of the research on PD has focused on men, leaving many questions unanswered.

For women, factors like hormonal changes, pregnancy, menopause, and aging can interact with Parkinson’s in ways that aren’t fully understood. These interactions can affect symptoms, treatment options, and overall well-being. While evidence-based knowledge is limited, existing guidance highlights the importance of addressing these differences and tailoring care to the specific needs of women as they navigate Parkinson’s throughout their lives.

This page is to give those women living with PD additional support and signposting to resources which may be of interest and applicable to you.

International Women’s Day

To mark International Women’s Day 2024 on March 8^th, Lisa Wynne was joined by Richelle Flanagan  to discuss ‘Understanding the Needs of Women with Parkinson’s Disease’.  Richelle presented the results of a survey on women with PD and the menopause, post menopause and about a new pilot study for women in collaboration with UCC. Richelle also touched on the importance of raising the voices of women with Parkinson’s to improve care and research in this webinar. Please click here to watch.

In 2022, Parkinson’s Ireland hosted a webinar on PD & Menopause. Presented by Lisa Wynne and Richelle Flanagan. Please click here to watch.

Disclaimer: We work hard to guarantee that the information provided by our services is up to date, objective, and accurate. Please use this in conjunction with medical advice from your Parkinson’s team and do not make any changes prior to discussing with your medical team. Information may have been updated since recording of these webinars.

Useful Information from Parkinson’s Europe

The following information has been put together by Parkinson’s Europe. Read on to find out more on pregnancy & breastfeeding: the potential effect of pregnancy on PD symptoms and PD medications in pregnancy , menstruation & menopause.   Parkinson’s Europe – Women & PD

The available evidence remains inconclusive, so if you are pregnant, planning to become pregnant, or considering breastfeeding, it’s important to discuss potential risks with your neurologist, obstetrician, or Parkinson’s nurse specialist if you have access to one.

Podcasts, Webinars & Resources:

Movers & Shakers: Women and Parkinson’s

Movers & Shakers Podcast released in November 2024- In this episode of the show, the panel are talking about the female experience with PD, how the disease differently impacts the genders, and what we need to do to even the playing field for biomedical research.

PD Avengers webinar hosted by Cure Parkinson’s: Women with Parkinson’s

In Her Shoes

In Her Shoes is a comprehensive guide written mostly by women with young onset Parkinson’s for women with YOPD. Sharing what they wish they were told when they were diagnosed. In Her Shoes discusses topics such as periods, pills, pregnancy, partners, and the power of positivity

Download for free: In Her Shoes

Pregspark

Pregspark is an online registry designed for women around the world who live with Young Onset Parkinson’s disease (YOPD) and who are  pregnant.

Pregnancy in Parkinson’s is rare, but with Parkinson’s disease being the fastest growing brain disease worldwide together with increasing maternal age, this combination will be more common in the future. The data collected through this registry will hope to contribute to development of guidelines, provide clinical information and support women through pregnancy & PD.

Women’s Parkinson’s Project is a platform co-founded by three women living with PD with an aim to increase awareness & research for women diagnosed and living with Parkinson’s.  Women’s Parkinson’s Project

Research:

My Moves Matter Study

The impact of hormonal fluctuations on women with Parkinson’s is to be investigated in the first-ever study of its kind in the world.

The study by Ireland’s University College Cork (UCC) and led by Professor Aideen Sullivan and Research fellow Lucy Collins-Stack is being undertaken in collaboration with Richelle Flanagan, inventor of the Parkinson’s self-care app My Moves Matter, which will be used by women who take part in the study.

Supported by the Health Innovation Hub Ireland (HiHi) and Enterprise Ireland, the study will be anonymous and can be done remotely from anywhere in the world as participants can take part entirely online and through the app. Women of all ages with Parkinson’s can participate – from those who are menstruating to those who are pregnant, perimenopausal, menopausal and post-menopausal – with a view to improving care for women with Parkinson’s. Click the following link to access survey : My Moves Matter UCC Parkinsons Study

Unmet needs of women living with Parkinson’s Disease. Gaps & controversies. 2022

Self-Image in Women with Parkinson’s Disease – PMC

Acknowledgements to Parkinson’s Europe for giving us permission to signpost you to their resources.