PD Avengers Championing ‘Women and PD’
The International Women’s Day 2021 theme this year was about #ChooseToChallenge . With the sentiment “from challenge comes change”, one of the PD Avengers founding members, Richelle Flanagan, chose to challenge and call out gender bias inequality for women with PD. She did this through an interview with one of the co-founders of the Women’s Brain Project, Dr Maria Teresa Ferretti, which is an organisation championing women’s brain health. As part of the webinar, Richelle set up a PD Avengers survey of women with PD and the effect of hormones on their symptoms. The results of the of the initial 20 respondents were so interesting that the PD Avengers Wellness Committee decided to disseminate the survey more widely to see if the results were correct. To date the survey has almost 200 responses, including a Hispanic survey.
The survey results identify an unmet need for better treatment of women Parkinson’s symptoms in relation to hormonal changes.
The results showed that 74% of women experience worsening of their symptoms around menstruation with rigidity, bradykinesia and dystonia being the worst affected motor symptoms (Figure 1). Whilst fatigue, anxiety and depression being the worst affected non- motor symptoms (figure 2).
Figure 1 PD Motor symptoms affected by menstruation.
Figure 2 PD Non-Motor symptoms affected by menstruation.
Interestingly, the Hispanic survey showed that the most affected non-motor symptoms were fatigue, pain, apathy, and anxiety.
86% of respondents reported that their symptoms got worse in the week prior to their menstrual bleed. This is linked to a drop in oestrogen levels in the week prior to menstruation. The drop in oestrogen affects the production of dopamine which can lead to worsening of PD symptoms.
65% of women who are perimenopausal reported that their symptoms fluctuate randomly and are more difficult to control. While 61% of women who have gone through the menopause report that their symptoms remained the same, 17% reported improvement in symptoms and 22% said they were worse.
21% of the non-Hispanic respondents reported having received HRT, whilst only 5% of Hispanic respondents reported having received HRT. Of the respondents who reported taking HRT, 46% reported an improvement in their PD symptoms whilst 27% reported worsening of symptoms and similarly 27% reported no change in symptoms. Of the women who reported receiving HRT, 78% said they received it during perimenopause.
Finally, 87% of women said that their neurologist had never discussed the effect of hormones on their PD symptoms; 96% said their neurologist never adjusted PD medication around their cycles; 95% said their neurologist never suggested HRT and 90% never discussed the effects of perimenopause or menopause on their PD (Figure 3).
Figure 3 Neurologists engagement around hormones effect on PD
This survey led the Wellness committee of the PD Avengers to organise two webinars, one European and one American to discuss panel of experts the result and debate what needs to be done for women with PD.
This survey led the Wellness committee of the PD Avengers to organise two webinars, one European and one American to discuss the survey results with a panel of experts and to discuss what needs to be done for women with PD.
These survey results corroborated many of the discussions by women with PD in various support groups both online and off-line about the effect of hormones on their PD. This survey led the Wellness committee of the PD Avengers to organise two webinars, one European and one American to discuss panel of experts the result and debate what needs to be done for women with PD.
The first webinar, hosted by the Cure Parkinson’s Trust, included the following panellists:
Professor Elena Moro, MD, PhD, Professor of Neurology at the faculty of medicine of the Grenoble Alpes University in Grenoble, France, and Co-chair of EAN Task Force on Gender and Diversity issues in Neurology.
Dr Maria Teresa Ferretti, PhD, Co-founder and Chief Scientific Officer, Women's Brain Project, Switzerland
Louise Ebenezer, Parkinson’s disease Clinical Nurse Specialist, ABM University Health Board, Bridgend, UK
Dr Cathy Molohan, PD Advocate, WPC Ambassador, PD Avenger, Director International Relations of Yuvedo, Germany
Dr Annelien Oosterbaan, MD/PhD, PD Advocate, Gynaecologist, The Erasmus University Medical Center, Rotterdam, Netherlands
Richelle Flanagan, Dietitian, PD Advocate, WPC Ambassador, PD Avengers Founding Member, Co-founder Women’s Parkinson’s Project, Ireland.
The webinar can be watched back here: https://cureparkinsons.org.uk/2021/04/pdavengers-webinar/
The second webinar was hosted by our partner the PMD Alliance with the following panellists:
The second webinar was hosted by our partner the PMD Alliance with the following panellists:
Dr Roberta Marongiu, Assistant Professor of Neuroscience in Neurological Surgery, Weill Cornell Brain & Spine Unit.
Dr Maria De León, Retired Movement disorder specialist, PD Advocate, and well-known author of Parkinson’s Diva.
Dr Indu Subramanian, MDS Parkinson’s Center of Excellence at the West Los Angeles Veteran’s Hospital and UCLA Hospital.
Kat Hill. RN, MSN, NP, PD Advocate for WPC, Davis Phinney Foundation, PD Avengers, and co-founder of the Women’s Parkinson’s Project
Richelle Flanagan, RDN, MSc, PD Advocate, WPC Ambassador, PD Avengers Founding Member, and co-founder of the Women’s Parkinson’s Project.
The webinar can be watched back here: https://www.pmdalliance.org/portfolio/women-with-pd-addressing-needs-pursuing-breakthrough-treatments/
There were many items discussed by these panels with the following main themes:
The fact that some centres are using extra PD medication to reduce the impact of the drop in oestrogen around menstruation, whilst other centres are using hormone therapy such as the contraceptive pill. Albeit that both approaches seem to work for some women with PD, these approaches are not widely used and there is no consensus on the best approach.
The lack of awareness of neurologists of the impact of hormones on PD symptoms around menstruation, perimenopause, and post menopause.
The lack of clinical guidelines for the management of hormonal issues in PD.
The lack of clinical trials looking at hormonal issues in women with PD.
The use of diaries, in particular digital monitoring of hormonal fluctuations in relation to PD symptoms and the potential for digital biomarkers to help identify differences between the genders but also potentially differentiating prodromal symptoms between genders.
The need for women to speak up for themselves and to discuss the impact they believe hormones are having on their symptoms.
The lack of funding for research into women with PD and the need to collaborate across other neurological conditions that are similarly impacted by hormones e.g., MS, migraine.
Several action items were identified out of these webinars which the PD Avengers wish to take forward:
1. Development of expert opinion guidelines for the management of women’s PD symptoms around menstruation.
2. Need for all education of neurologists around hormonal impacts on PD symptoms.
3. Need for clinical trials to give more robust evidence for the better use of PD medication and hormonal medication for the management of PD symptoms in women.
4. Development of a research paper based upon the PD Avengers survey results and the webinar discussions.
5. Collaboration across different centres on the development of research surveys of women with PD.
6. Development of advocacy information about women, PD, and hormones for women to discuss with their medical providers.
7. Call to action women with PD to work together to raise awareness of the unmet medical needs of women living with PD.
8. Call to action by the PD Avengers to raise awareness of the need for increased funding into research for women and PD.
9. The need for a ‘Women with PD’ taskforce to call for action to improve the lives of women living with PD.
The surveys are still available if women with PD would like to complete them:
Non - Hispanic https://www.surveymonkey.com/r/PDWomenHormones
Hispanic https://www.surveymonkey.com/r/mujeryparkinsons
Please sign up for the PD Avengers https://www.pdavengers.com/become-a-pd-avenger to be kept up to date with our actions for Women with PD including sharing research surveys, research results, further webinars, and any other information relevant to women with PD.